Not feeling healthy? New data shows you aren’t alone

2023-04-05T07:01:00

(BPT) – In the U.S., people want to improve their health, but many don’t know how. According to data from two national surveys designed by leading human genetics company 23andMe, 55% of people in the U.S. don’t feel healthy and 63% don’t feel in control of their health.*

Patients who want help addressing their medical concerns and improving their health often turn to their primary care physicians (PCPs) for support. However, while many people trust their doctors, they also feel there’s a gap in the care they want and receive.

When it comes to health care, people want more personalized care rather than a one-size-fits-all treatment. Every person has different needs and requires tailored prevention plans that address their specific health concerns. One way to foster a more personalized approach and bridge this existing gap: Genetics.

The role of genetics in personalized care

The survey data showed that 62% of patients want tailored care advice, but only 36% say that’s what they’re getting. Creating a personal care plan can be difficult for health care professionals without a complete picture of an individual’s health. While you may tell your PCPs about your lifestyle choices and share past family and personal medical history, you can’t know all your future health risks. That’s where genetic testing can help.

On at least a weekly basis, many health care professionals encounter a clinical case where genetics plays a significant role, according to the survey findings. The data, which also captured physicians’ attitudes on DNA testing, found 62% of doctors felt that genetic testing could help them provide more individualized care plans. More than half feel using it could lead to better patient outcomes.

Patients agree. According to a survey of people’s attitudes on the role of genetic testing in tailored care plans, 75% of people in the U.S. said they’d be more likely to follow a doctor’s advice if they knew their genetic profile was used to personalize their care.

Bridging the gap

Health care professionals can develop targeted treatment and prevention plans for their patients by leveraging an individual’s DNA, medical history and lifestyle. According to 23andMe, most customers found they had an increased risk for at least one disease or health condition. Knowing this information is empowering, as a 2019 Health customer survey conducted by 23andMe found more than 3 out of 4 customers took a healthier action after receiving their reports.**

Because of genetic data, patients and doctors are more equipped than ever to realize the promise of health care that is tailored specifically to the individual. To learn more about how DNA testing can help build a healthier future together through genetics-based personalized care, visit 23andMe.com.

*Based on 2022 surveys, designed by 23andMe, Medscape and Material Holdings LLC, of approximately 1,000 doctors and approximately 1,500 patients.

**Based on a 2019 survey, designed by 23andMe and M/A/R/C Research, of approximately 1,000 23andMe Health + Ancestry customers.

Kidney stones: How one common recurring symptom could signal a rare disease

2023-04-03T15:01:00

(BPT) – Throughout her life, Kim had no explanation for the recurrent, painful kidney stones she experienced. Growing up she and her doctors dismissed these stones and associated pain for other conditions like menstrual cramps and irritable bowel syndrome (IBS). It wasn’t until her sister Joy passed away from the same disease that Kim received answers in the form of an official diagnosis — Kim’s kidney stones were the result of a rare, inherited disease called primary hyperoxaluria type 1 (PH1).

Kidney stones are a hallmark symptom of PH1. However, many people who experience recurrent stones in adulthood or even one kidney stone as a child do not consider or investigate a root cause, which can lead to delayed diagnoses and further complications. After watching her sister’s progressive PH1 symptoms, Kim is determined to ensure her sister’s memory lives on by sharing PH1 education and her own disease journey. Here’s some information to know about PH1, including signs and symptoms, to better understand what to look for and when to potentially suspect this rare disease.

What is PH1?

PH1 causes an overproduction of oxalate — an unneeded waste product that cannot be broken down further — in the liver. Normally, oxalate is present only in small amounts, is not used by the body for anything and needs to be eliminated by the kidneys. The overproduction of oxalate can lead to the formation of painful and recurrent kidney stones as well as progressive damage — meaning it can get worse over time and cause permanent damage.

How rare is PH1?

As a rare disease, PH1 affects approximately 1 to 3 individuals per million in the United States and Europe, with an estimated 1,300 to 2,100 diagnosed cases across geographies. In some regions, such as the Middle East and North Africa, the genetic prevalence of PH1 is estimated to be higher.

After getting diagnosed with PH1, Kim took a genealogy test that showed she is, in part, of Middle Eastern descent, giving her a higher likelihood of having PH1. Knowing this helped fuel her vigorous research to learn about disease management options, especially since she and her siblings are more likely to have PH1 due to their ancestry.

What are the common symptoms of PH1?

Most people with PH1 have their first symptoms as children or teens, but some people don’t have signs until they’re adults. Kidney stones are the most common symptom of PH1, which may include pain in the side of the body, painful and/or bloody urination and urinary tract infections. However, not everyone with PH1 may have kidney stones. Other symptoms of PH1 include, but are not limited to, nephrocalcinosis (crystal deposits in kidney tissue), failure to thrive in babies and end-stage kidney disease (kidney failure).

Kim was not the first person in her family to experience kidney stones. In fact, this seemingly common symptom ran in her family. Her brother passed away at birth due to crystallization in his kidneys, and her sister also experienced kidney stones, among other PH1 symptoms, throughout her life. Their symptoms were undiagnosed by doctors for years until they received a formal diagnosis later in life — which unfortunately, was too late in her sister’s battle with PH1.

How are patients diagnosed with PH1, and how can they manage a positive diagnosis?

PH1 can be diagnosed by a doctor measuring oxalate levels in the urine or blood, and/or with a genetic test. While managing PH1 is life long, there are various ways to address the symptoms. A person diagnosed with PH1 should work with their doctor or care team to create a personalized care plan, which likely would include monitoring oxalate levels and kidney function. Management options include hyperhydration (drinking a lot of water to dilute urinary calcium oxalate), dialysis (removing oxalate and other waste products from the blood) and certain supplements or oxalate-lowering medications.

How often are people diagnosed with PH1?

For many patients, like Kim, PH1 is not diagnosed immediately. Half of people living with PH1 may be undiagnosed. Unfortunately, Kim’s sister was also diagnosed later in life and, due to the delayed diagnosis, developed severe oxalosis throughout her body, including in her legs and heart before passing away.

Today, Kim is passionate about telling her story, so she was happy to be sponsored to share her story with Alnylam. She also advocates for herself and others with PH1. To learn more about PH1 and access educational resources about the symptoms and management of PH1, visit www.TakeOnPH1.com. If you suspect you may have PH1, talk to your doctor about your symptoms and testing.

A message from Alnylam Pharmaceuticals

PH1-USA-00257-V1

Innovative ways to incorporate unexpected design into your bathroom

2023-04-03T06:01:00

(BPT) – Bathrooms are frequently used spaces in a home that are brimming with design potential. Plus, these smaller rooms are ideal to experiment with new aesthetics and unique features. Incorporating unexpected elements in your bathroom’s design can add character and interest, while still creating a functional space you’ll love.

Consider these tips to help you incorporate unexpected design into your own bathroom:

Experimental color: Rather than traditional white or neutral color schemes, try strategically incorporating rich colors or patterns. Colorful tiles, a bold accent wall or brightly hued towels are just a few examples. Wallpaper is another way to add color and pattern, with modern options available appropriate for the more humid bathroom environment. Not only will pops of color make the space more visually interesting, but it will also create a joyful atmosphere in the bathroom.

Glam glass: The sink is the ideal location to feature this luxe material. Inspired by a Champagne glass, the Salute vessel sink by Kohler is artistic and elegant — and at 15 inches is ideal for small spaces, making an impression extending well beyond its stature. If you prefer an undermount, rectangular glass sink, the Yepsen Artist Editions sink is for you. Reminiscent of the carved textures on marble and architectural facades, it’s available in both translucent and opaque colorways.

Mixed materials: Blending complementary textures and materials adds depth to a space in a subtle yet unexpected way. For example, pairing a sleek and modern shower with a vintage clawfoot tub can create a unique and eclectic feel. Adding natural elements such as wood or stone can also add interest to the room, creating a relaxing, spa-like atmosphere.

Modern metals: The right metals elevate and define a faucet and bathroom accessories, refining its overall look. Thanks to the Kohler Finish Program, you don’t have to feel limited in your choices. The program offers eight key finishes across product categories, including matte black, brushed modern brass, French gold, vibrant titanium and more. Plus, these finishes resist corrosion and tarnishing to ensure enduring beauty for years to come.

Curated decor: A great way to create an unexpected design in your bathroom is by curating interesting decorations. Look for pieces that show off your style, but be sure not to go overboard with the clutter. One or two pieces of art or sculpture are plenty for the average bathroom space. A pro tip: Use walls and vertical spaces for art rather than taking up valuable countertop space.

Statement pieces: Invest in remarkable pieces that attract the eye, like the new Aureus Artist Editions Vessel sink that mixes two design inspirations — Asian art and marble. The Asian art Kintsukuroi, which means golden repair, is the process of fixing broken pottery with lacquer resin dusted or mixed with powdered gold, silver or platinum. In looking at marble, the sink draws inspiration from the natural veining patterns. Combined, these influences evoke contemporary design with bold veins and subtle hints of gold and brown.

Elevated lighting: Instead of relying only on harsh overhead lighting, consider incorporating more ambient lighting throughout the bathroom space. This could be achieved by adding new lighting elements or installing dimmer switches. Flexible lighting options in visually appealing fixtures create an environment that is as fashionable as it is functional. Whether you want soft light for a long soak or bright light to prep for the day, you will have options.

When it comes to home design, bathrooms are just as important as any other room. By incorporating unexpected design in these frequently used rooms, you’ll create spaces that reflect your style and intrigue visitors. With a little creativity and effort, the bathroom can become a stunning space in your home.

National Minority Health Month: Shining a Spotlight on Cancer Disparities

2023-04-03T06:01:00

(BPT) – April is National Minority Health Month, which is dedicated to raising awareness about the health disparities that exist among many populations in the United States. One significant area of concern is cancer-related health disparities, which impact racial, ethnic and LGBTQ+ groups disproportionately.

Are you more likely to experience cancer-related health disparities?

Anyone can get cancer, but some groups are more likely to be diagnosed, have an aggressive cancer and die of the disease. These differences in outcomes are called health disparities. Often, groups that are vulnerable, marginalized or exposed to biases have worse cancer outcomes due to several systemic issues — including discrimination — that put them at higher risk.

Did you know:

  • Black people are more likely to be diagnosed with aggressive breast cancer or prostate cancer. They are also more likely to die of these cancers than non-Hispanic white people.
  • Hispanic, Black, American Indian and Native Alaskan people are less likely to have health insurance than people from other racial or ethnic groups. This could lead to fewer cancer screenings and later detection.
  • When undergoing genetic testing for hereditary cancer, Black Americans, Asian Americans and Pacific Islanders are more likely to receive a confusing test result known as a “variant of uncertain significance” — a change in a person’s DNA that has an unknown effect on their cancer risk.
  • People from the LGBTQ+ community are less likely to receive cancer screening. One in three transgender people report having a negative experience with a healthcare provider related to being transgender.
  • Black and Native Americans have the highest incidence of colorectal cancer of any racial or ethnic group, and they are also more likely to die from the disease than other groups.

Understanding your hereditary cancer risk could save your life.

About 10% of cancers are caused by inherited mutations in specific genes. These mutations are linked to an increased risk for various types of cancer, including breast, prostate, ovarian, endometrial, pancreatic, colorectal, stomach and skin cancer.

While white female celebrities like Angelina Jolie, Christina Applegate and Kelly Osbourne get a disproportionate amount of media attention for having BRCA gene mutations (a condition linked to breast, ovarian, prostate and pancreatic cancer), people of all backgrounds and genders can inherit genetic mutations that predispose them to cancer.

Studies have shown that Black and white women inherit genetic mutations associated with breast cancer at the same rates, yet Black women are much less likely to undergo genetic counseling and testing, largely due to differences in physician recommendations and access to care. This disparity contributes to later-stage diagnoses and higher mortality rates among Black women, who are 40% more likely to die of breast cancer than white women.

Up to 90% of people are unaware that they have a genetic mutation that increases their cancer risk, and most people have no idea they are predisposed to cancer until they — or a close family member — receive a cancer diagnosis that leads them to get genetic testing.

Protecting your health and combatting disparities

Knowing whether you have an inherited gene mutation that increases your cancer risk can save your life and the lives of your family members. Screenings and other steps can help people prevent cancer or catch it at its earliest, most treatable stage. If you suspect that hereditary cancer runs in your family, be sure to:

  1. Learn your family history of cancer.
  2. Talk to your healthcare provider about routine screenings you should be having.
  3. Ask if genetic counseling and testing might be appropriate.
  4. Talk to your family members about what you learn.

Fortunately, many organizations are working to address health disparities and improve people’s access to healthcare. Specific nonprofits are dedicated to supporting Black, Hispanic, Asian, American Indian and LGBTQ+ populations (view a full list here). Other organizations, like FORCE (Facing Our Risk of Cancer Empowered), offer education, support and advocacy for anyone affected by hereditary cancer.

Join us in raising awareness about health disparities that continue to affect people from diverse racial, ethnic and LGBTQ+ groups. We can all make an impact by advocating for health equity and encouraging others to safeguard their health through education, cancer screening and prevention.

Looking to level up your family’s health? Try dairy foods; the benefits go beyond bones

2023-03-31T15:07:00

(BPT) – From delicious and nutritious cheese and creamy yogurt to cool, nutrient-rich milk and refreshing smoothies, dairy is a fundamental part of American cuisine. Not only do dairy foods make eating more enjoyable, they also provide important nutrients and health benefits that go beyond strong bones.

Dairy benefits for kids

For parents, dairy offers great first-food choices for little ones like yogurt and cheese for baby’s first bites and tantalizing options for bigger kids. Plus, by exposing your growing child to many foods, textures and tastes, you’re helping them learn to like a wide variety of nutritious foods now and into the future.

Dairy every day is a healthy way to nourish kids’ brains, bones and bodies. Consider a cup of milk, for example. Just one glass provides 7 of the 14 nutrients the American Academy of Pediatrics says are important to brain development, helping to set the stage for cognition and IQ later in life, as noted in the medical journal Pediatrics.

“The brain-supporting nutrients milk provides are protein, zinc, selenium, iodine, choline and vitamins A and D,” said Dr. Elizabeth Pearce, Boston University Medical Center. “And while all of these nutrients play an important role in brain development, iodine stands out.” According to the World Health Organization, iodine deficiency is the most preventable cause of intellectual disability in the world.

In particular, people of child-bearing age who do not regularly consume dairy foods, eggs, seafood or iodized table salt may not consume enough iodine to meet increased needs during pregnancy and lactation, which could lead to neurocognitive defects and lower childhood IQ, according to the Centers for Disease Control (CDC). An easy way to get enough iodine during this critical life stage is to include 3 servings of dairy at meals or snacks. At about 20 cents per 8-ounce serving, milk is an affordable source of iodine and other essential nutrients.

Preventing osteoporosis later

Bones are the framework for your child’s growing body. The healthy habits your child forms today can make, or literally break, their bones as they age. That’s because osteoporosis — the disease that makes bones brittle — is a process that can start in early childhood if nutrition and lifestyle habits are not incorporated, but it doesn’t reveal itself until adulthood.

Building your child’s bone bank account is a lot like saving for their education: The more they save now, the bigger investment for their bone health future. Bones benefit from nutrients found in dairy foods like calcium, vitamin D, protein, phosphorus, zinc and magnesium, and help kids develop and reach peak bone mass.

Thankfully, there are plenty of nutrient-packed dairy options kids love, like milk, yogurt and cheese that can help keep them nourished and fueled to focus and perform at their best.

Dairy benefits for adults

“Dairy’s benefits go beyond bones with a body of research indicating they are linked to both lower inflammation and risk of non-communicable diseases,” said Dr. Chris Cifelli, SVP of Nutrition Research at National Dairy Council. “Chronic, low-grade inflammation can result from a continuously out-of-balance immune system, and, the good news is, three systematic reviews found dairy foods can help keep markers of chronic inflammation in check.”

For example, a systematic review in the Journal of the American College of Nutrition evaluated 27 randomized control trials and found that dairy foods (e.g., milk, cheese and yogurt) and dairy proteins (e.g., whey, casein) have neutral to beneficial effects on inflammation.

Not only are dairy foods part of an anti-inflammatory diet, consumption of dairy foods also is linked to lower risk of type 2 diabetes, cardiovascular disease and high blood pressure, which disproportionately impact people of color. In fact, a recent study in the journal Nutrients found dairy foods are linked to a 26% reduced risk of heart disease deaths for those 19 and older and were not linked to all-cause or cancer mortality.

Lactose-free dairy options

There are a variety of dairy foods to meet people’s personalized nutrition and wellness needs, from milk with extra protein or kefir with probiotics to lactose-free dairy milk for people who cannot tolerate the lactose in dairy. Lactose-free dairy milk is widely available at grocery stores from name brand to store brand. It is real dairy milk with the lactose removed or filtered out, so the same nutrients will be in every serving. People can also choose hard cheeses, which contain minimal lactose, or yogurt, because its probiotics help digest the lactose.

To learn more about dairy and its health benefits for kids and adults, visit USDairy.com.

Breaking up with friends: How to know when it’s time to move on

2023-03-31T12:31:00

(BPT) – Friendships are an essential part of living a fulfilling life. However, just like any other relationship, some friends are only meant to be part of your life for a reason or a season, rather than a lifetime. The problem is, no one really talks about how to evaluate your friendships and let go of the ones that are no longer adding value to your life.

While an overwhelming majority (77%) of respondents in a recent Bumble For Friends survey* believe that friends are one of the main factors to a happy and healthy life, 42% have never intentionally evaluated the existing friendships in their lives, and 1 in 4 (25%) agree that they are stuck in outdated friendships that no longer serve them.

Danielle Bayard Jackson, Bumble For Friends’ friendship expert, shares her advice on how to intentionally assess your friendships so that you can find peace in letting go of the ones you’ve outgrown. She suggests starting by asking yourself these questions:

Does the friendship feel like an obligation?

Many people have circumstantial friendships, meaning relationships that are mostly based on convenience, such as taking the same classes or having the same hobbies. Bumble For Friends’ survey* found that 1 in 3 (35%) people have these kinds of friendships — they’re common, and they add value to life by offering a certain kind of companionship. However, when these friendships become obligatory, meaning that you maintain them out of a sense of duty, it’s time to reassess.

Why are you maintaining the friendship?

One of the most common reasons why people hold on to friendships that no longer serve them is that they feel they owe it to history. They may also feel scared that if they let a friendship go, they’ll have a hard time finding new friendships. If the reasons you’ve elected to keep a friendship don’t include a value-add to your life, then it might be time to mend or end the relationship.

What is maintaining the friendship costing you?

Holding on to a friendship that you aren’t genuinely interested in maintaining can lead to resentment, as you’re investing time, energy and emotional bandwidth that you most likely can’t afford. It can also impact your other friendships, as you’re dedicating space that you could be using on friends that fill your cup. There are only so many hours in the day, so it’s important to focus on friendships that positively impact your life.

If you decide that it’s time to part ways with the friendship, Jackson recommends a three-step formula for approaching the conversation:

  • Show that you’re intentional about the decision. Say, “Listen, I’ve been thinking a lot lately….”
  • Address your needs without blaming the other person. Use ‘I’ statements as much as you can; rather than “you are never there for me when I need you…,” try saying, “I need friendships in my life that can prioritize and support me in times of need.”
  • Tell them how much you appreciate them and what your intention is for moving forward. This could be, “I have appreciated our friendship so much, and you have been such an integral part of my life. However, I won’t be able to show up in this friendship in the same way that I have before.”

“Sometimes letting go is the first step toward creating a stronger friendship circle,” says Jackson. “Ending a friendship that no longer fits doesn’t make you mean or disloyal. Instead, it creates space for the both of you to be better positioned to invite new connections into your lives.”

If things have changed in your life and you feel like you’ve maybe outgrown a friendship, Jackson suggests intentionally doing things to form new friendships — whether that be joining group activities, asking friends of friends to tag along to their next event, or downloading Bumble For Friends, the friendship-finding mode on the Bumble app. By putting yourself out there, you’ll be on the right track to creating a stronger social circle around you.

For more expert advice on building (and maintaining) strong friendships, visit bumble.com/bff.

*Research was commissioned by Bumble and carried out online by Censuswide in February 2023 amongst a sample of more than 1,000 US adults who have either attended college or are currently in college.

Friendship, Trust and Support on My Schizophrenia Journey

2023-03-30T12:05:00

(BPT) – The story you are about to read may not be representative of all people living with schizophrenia. The opinions expressed here are those of Robert, a person living with schizophrenia, and are not a substitute for medical advice or judgment. Always talk to your doctor/healthcare provider (HCP) about available and appropriate treatment options. Individual results may vary.

My life for three decades had been a struggle. I was living on the streets, found it hard to hold a job, and had symptoms—like hearing voices—that I didn’t understand. What I didn’t know until I was diagnosed by a healthcare provider is that I was living with schizophrenia, a serious mental health condition that affects about one percent of the U.S. population.1

When I first met Scott, I was carrying all my possessions around on my bike. Scott often reminds me that despite my tough situation, he was amazed at the big smile on my face. That chance meeting turned into a lifelong friendship that would set me on a new path.

At the time we met, Scott was on an extended trip to California visiting his son in college. Later that week, Scott offered to buy me a croissant and a cup of coffee, and I accepted.

Life for me at that time was difficult. I had a hard time staying in one place for too long and struggled making decisions, but I was convinced that this was just a result of being “unhoused.” It never occurred to me that I could be struggling from a serious mental illness.

As time went on, it was sometimes challenging for me to tell the difference between real and imaginary dangers, and there were times when I would hear voices that weren’t there. I thought that my mental health may be a problem, but I had no connections or resources to ask for help. I thought I could use a friend, and Scott became that for me. The more time he spent getting to know me, the more I trusted him. Over many coffees and croissants, we shared stories about our lives and learned that we had some important things in common.

Over the next several months, Scott travelled back and forth between Rhode Island and California and we continued to build our friendship. He even spent a night sleeping in a parking garage with me—he wanted me to know that I had an ally in him. I did not know this at the time, but Scott had done some of his own research about support options that could be available to me. So when he eventually offered to help me find an HCP for a potential evaluation, I was ready.

My acceptance of Scott’s offer of help was influenced by his compassion and support for my well-being. Scott went with me to a mental health center where, after a full evaluation, an HCP formally diagnosed me with schizophrenia. Some of the symptoms of schizophrenia may include, but are not limited to, hallucinations, delusions, difficulty functioning normally, trouble focusing and behaviors associated with psychosis.2 Most people living with schizophrenia will require an integrated approach to treatment that includes medication, therapy, and psychosocial support to manage their condition.3

After talking to my doctor about my treatment options, we decided that ARISTADA® (aripiprozole lauroxil) may be a good choice for my schizophrenia treatment journey. ARISTADA is a prescription medicine used to treat schizophrenia in adults and is given via injection by a healthcare professional. After establishing tolerability to aripiprozole and completing treatment initiation, I began taking the 2-month (1064 mg) dose of ARISTADA.4,5

Here is some important safety information about ARISTADA: It is not known if ARISTADA is safe and effective in patients under 18. It’s also important to know that elderly people with dementia-related psychosis are at increased risk of death when treated with antipsychotic medicines including ARISTADA. ARISTADA is not for the treatment of people who have lost touch with reality (psychosis) due to confusion and memory loss (dementia). The most common side effects of ARISTADA include restlessness or feeling like you need to move (akathisia).5 These are not all of the side effects associated with ARISTADA. For additional Important Safety Information, please see below.

Since starting on ARISTADA, I have noticed an improvement in my schizophrenia symptoms. This has just been my experience and yours may be different. Talk to your healthcare team about what may be best for you.

After helping me seek treatment, Scott went back to Rhode Island, but we talked every day. On one occasion, I expressed wanting to move to New England and Scott was supportive of the idea—it was one of the biggest decisions on my journey.

In our search for my permanent home, Scott found a cabin about 45 minutes away from his house. I packed a bag and moved across the country. It was the first time in many years that I had a place of my own. When I woke up the next morning in my bed, I knew I was finally home.

No matter what the future holds, I maintain a dialogue with my care team and stick with my treatment plan with the support of Scott and my healthcare providers.

This is intended as informational only and not a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical and/or mental health condition.

Please read the Important Safety Information for ARISTADA INITIO® and ARISTADA below. Discuss all benefits and risks with a healthcare provider. See Prescribing Information for ARISTADA INITIO and ARISTADA, including Boxed Warning, and Medication Guides for ARISTADA INITIO and ARISTADA.

INDICATION and IMPORTANT SAFETY INFORMATION for ARISTADA INITIO® (aripiprazole lauroxil) and ARISTADA® (aripiprazole lauroxil) extended-release injectable suspension, for intramuscular use

INDICATION

ARISTADA INITIO is a prescription medicine given as a one-time injection and is used in combination with oral aripiprazole to start ARISTADA treatment, or re-start ARISTADA treatment after a missed dose, when ARISTADA is used for the treatment of schizophrenia in adults.

ARISTADA is a prescription medicine given by injection by a healthcare professional and used to treat schizophrenia in adults.

It is not known if ARISTADA INITIO and/or ARISTADA are safe and effective in children under 18 years of age.

IMPORTANT SAFETY INFORMATION

Elderly people with dementia-related psychosis are at increased risk of death when treated with antipsychotic medicines including ARISTADA INITIO and ARISTADA. ARISTADA INITIO and ARISTADA are not for the treatment of people who have lost touch with reality (psychosis) due to confusion and memory loss (dementia).

Contraindication: Do not receive ARISTADA INITIO or ARISTADA if you are allergic to aripiprazole or any of the ingredients in ARISTADA. Allergic reactions to aripiprazole have ranged from rash, hives and itching to anaphylaxis, which may include difficulty breathing, tightness in the chest, and swelling of the mouth, face, lips, or tongue.

ARISTADA INITIO and/or ARISTADA may cause serious side effects including:

  • Cerebrovascular problems (including stroke) in elderly people with dementia-related psychosis that can lead to death.
  • Neuroleptic malignant syndrome (NMS), a serious condition that can lead to death. Call your healthcare provider or go to the nearest hospital emergency room right away if you have some or all of the following signs and symptoms of NMS:
    • high fever
    • stiff muscles
    • confusion
    • sweating
    • changes in pulse, heart rate, and blood pressure
  • Uncontrolled body movements (tardive dyskinesia). ARISTADA INITIO and ARISTADA may cause movements that you cannot control in your face, tongue, or other body parts. Tardive dyskinesia may not go away, even if you stop receiving ARISTADA. Tardive dyskinesia may also start after you stop receiving ARISTADA.
  • Problems with your metabolism such as:
    • High blood sugar (hyperglycemia). Increases in blood sugar can happen in some people who receive ARISTADA INITIO and/or ARISTADA. Extremely high blood sugar can lead to coma or death. If you have diabetes or risk factors for diabetes (such as being overweight or a family history of diabetes), your healthcare provider should check your blood sugar before you receive ARISTADA INITIO and/or ARISTADA and during your treatment with ARISTADA.
      • Call your healthcare provider if you have any of these symptoms of high blood sugar:
        • feel very thirsty
        • need to urinate more than usual
        • feel very hungry
        • feel weak or tired
        • feel sick to your stomach
        • feel confused, or your breath smells fruity
    • Increased fat levels (cholesterol and triglycerides) in your blood
    • Weight gain. You and your healthcare provider should check your weight regularly.
  • Unusual and uncontrollable (compulsive) urges. Some people taking aripiprazole have had strong unusual urges such as gambling that cannot be controlled (compulsive gambling). Other compulsive urges include sexual urges, shopping, and eating or binge eating. If you or your family members notice that you are having unusual strong urges, talk to your healthcare provider.
  • Decreased blood pressure (orthostatic hypotension). You may feel lightheaded or faint when you rise too quickly from a sitting or lying position.
  • Falls. ARISTADA INITIO and ARISTADA may make you sleepy or dizzy when standing which may make you at risk for falls and related injuries
  • Low white blood cell count
  • Seizures (convulsions)
  • Problems controlling your body temperature. Avoid becoming too hot or dehydrated. Do not exercise too much. In hot weather, stay inside in a cool place if possible. Stay out of the sun. Do not wear too much clothing or heavy clothing. Drink plenty of water.
  • Difficulty swallowing

The most common side effects of ARISTADA INITIO and ARISTADA include restlessness or feeling like you need to move (akathisia). These are not all the possible side effects of ARISTADA INITIO and ARISTADA. You should tell your healthcare provider about any side-effects you have.

Do not drive, operate hazardous machinery, or do other dangerous activities until you know how ARISTADA INITIO and ARISTADA affect you. ARISTADA INITIO and ARISTADA may affect your judgment, thinking or motor skills.

Before receiving ARISTADA INITIO and ARISTADA tell your healthcare provider about all of your medical conditions, including if you:

  • have not taken Abilify®, Abilify Maintena®, or any aripiprazole product before
  • have or had heart problems or a stroke
  • have diabetes or high blood sugar or a family history of diabetes or high blood sugar. Your healthcare provider should check your blood sugar before you receive ARISTADA INITIO and/or ARISTADA and during your treatment with ARISTADA
  • have or had low or high blood pressure
  • have or had seizures (convulsions)
  • have or had a low white blood cell count
  • have problems that may affect you receiving an injection in your buttocks or your arm
  • are pregnant or plan to become pregnant. It is not known if ARISTADA INITIO and/or ARISTADA will harm your unborn baby. If you become pregnant while taking ARISTADA INITIO and/or ARISTADA, talk to your healthcare provider about registering with the National Pregnancy Registry for Atypical Antipsychotics. You can register by calling
    1-866-961-2388, or visit http://womensmentalhealth.org/clinical-and-research-programs/pregnancyregistry/
  • are breastfeeding or plan to breastfeed. ARISTADA INITIO and/or ARISTADA can pass into your breast milk. It is not known if it may harm your baby. Talk to your healthcare provider about the best way to feed your baby if you receive ARISTADA INITIO and/or ARISTADA.

Tell your healthcare provider about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements. ARISTADA INITIO and ARISTADA and other medicines may affect each other causing possible serious side effects. Do not start or stop any medicines after you receive ARISTADA INITIO and ARISTADA without talking to your healthcare provider first.

If you have any questions about your health or medicines, talk to your healthcare provider. You are encouraged to report all side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088.

References:

1 Cloutier M, Aigbogun MS, Guerin A, et al. The Economic Burden of Schizophrenia in the United States in 2013. J Clin Psychiatry. 2016;77(6):764-771. doi:10.4088/JCP.15m10278

2 American Psychiatric Association. Schizophrenia Spectrum and Other Psychiatric Disorders. Diagnostic and Statistical Manual of Mental Disorders. 5th ed. Washington, DC: American Psychiatric Publishing; 2013.

3 Schizophrenia Fact Sheet. National Alliance on Mental Illness (NAMI). Accessed January 26, 2023. https://www.nami.org/NAMI/media/NAMI-Media/Images/FactSheets/Schizophrenia-FS.pdf

4 ARISTADA [Medication Guide]. Waltham, MA: Alkermes, Inc.; 2021.

5 ARISTADA [Prescribing Information]. Waltham, MA: Alkermes, Inc.; 2021.

ALKERMES® is a registered trademark of Alkermes, Inc. ARISTADA® and logo, and ARISTADA INITIO®, are registered trademarks of Alkermes Pharma Ireland Limited, used by Alkermes, Inc., under license. Abilify® is a trademark of Otsuka Pharmaceutical Company and Abilify Maintena® is a trademark of Otsuka Pharmaceutical Co., Ltd. ©2023 Alkermes, Inc. All rights reserved. ARI-004930.

From struggle to success: One woman’s weight loss journey

2023-03-27T08:01:00

Real patient taking CONTRAVE at the time of her interview in January 2023 and compensated for sharing her inspiring story. Individual results may vary.

(BPT) – If you’ve had difficulty managing your weight throughout your life, you’re certainly not alone. Like project manager Janet, many people search for positive solutions to reach and maintain a healthier weight, but often find themselves in a spiral of self-defeating thoughts that can be hard to overcome.

I’ve struggled with managing my weight my entire life,” recalled Janet. “My eating behavior led to decades of weight gain, accompanied by physical and emotional pain.”

Seeking to improve her situation, Janet hoped that her healthcare providers could be a helpful resource, but found herself disappointed by their responses. “For years, I sought help from my doctors, only to be regularly shut down with my concerns. I felt embarrassed that my struggles were being dismissed by someone who was supposed to be helping me, yet couldn’t even look me in the eye when discussing weight,” Janet said. “They never took the time to help me; it was always ‘just eat right and exercise.’”

Because she was unable to find specific direction and help from her doctors, Janet often felt worse about herself. “Stress was a main trigger for my eating as there was so much to juggle between working full-time, raising children and family obligations. When I felt disappointed because something wasn’t going right for me, I would spiral into a negative mindset. I would start to think that nobody cared if I took care of myself or not, or that I deserved snacks because of a situation, and that eating would make me feel better,” Janet explained. “These thought patterns only prompted me to eat more. I could easily power through bags of cookies and chips with no stop button in sight.”

Fortunately, she found a healthcare provider who took her concerns seriously and helped her come up with concrete solutions. I felt like I was being given up on until I finally found a nurse practitioner who listened to me and who was truly on my side,” said Janet. “She was the one who finally told me there is something else I can do alongside diet and exercise. That’s when I found out about the medication CONTRAVE® (naltrexone HCI/bupropion HCl).”

What is CONTRAVE?

CONTRAVE is a prescription weight-loss medicine that may help some adults with a body mass index (BMI) of 30 kg/m2 or greater (obese), or adults with a BMI of 27 kg/m2 or greater (overweight) with at least one weight-related medical problem such as high blood pressure, high cholesterol, or type 2 diabetes, lose weight and keep the weight off. CONTRAVE should be used with a reduced-calorie diet and increased physical activity. It is not known if CONTRAVE changes your risk of heart problems or stroke or of death due to heart problems or stroke. It is not known if CONTRAVE is safe and effective when taken with other prescription, over-the-counter, or herbal weight-loss products. CONTRAVE is not approved to treat depression or other mental illnesses, or to help people quit smoking (smoking cessation).

CONTRAVE can cause serious side effects including:
Suicidal thoughts or actions: One of the ingredients in CONTRAVE is bupropion. Bupropion has caused some people to have suicidal thoughts or actions or unusual changes in behavior, whether or not they are taking medicines used to treat depression. Bupropion may increase the risk of suicidal thoughts or actions in some children, teenagers, and young adults within the first few months of treatment. If you already have depression or other mental illnesses, taking bupropion may cause it to get worse, especially within the first few months of treatment.

Continue reading for additional Important Safety Information.

The weight-loss journey

“My journey wasn’t easy. Alongside the physical part of losing weight, I had to confront my lifelong relationship issues with food,” explained Janet. “I spent the first year of my journey directly evaluating my relationship with food to figure out how and why I used food as a coping mechanism. I needed to heal a lot of hurt and lingering self-negativity to make room for healthier changes in my life.”

CONTRAVE helped Janet get to a point where she no longer needed to reach for food as a comfort. “I know now that I can manage those triggers and cravings in healthier ways,” she added.

As part of her journey, Janet began walking, then added spinning, running and fitness classes to her regular exercise routine — and grew to love moving again. “Working out had been so important to me in my 20s and 30s, and it was something that I loved,” Janet said. “Fitness has once again become a passion and a priority in my self-care.”

Today, Janet enjoys taking walks with her daughter, and embraces the internal peace and self-acceptance that have become her biggest weight-loss victories.

“I have now been on CONTRAVE for over two years, and it has been such a phenomenal experience,” Janet described. “I worked really hard, but CONTRAVE gave me the foundation I needed to lose weight. Success continues to build and further change my life. I learned that not only am I capable of positive change, but I’m worthy of it.”

If you’re struggling with your own weight-loss journey, learn more at CONTRAVE.com.

IMPORTANT SAFETY INFORMATION (continued)

While taking CONTRAVE, you or your family members should pay close attention to any changes, especially sudden changes, in mood, behaviors, thoughts, or feelings. This is very important when you start taking CONTRAVE or when your dose changes.

Stop taking CONTRAVE and call a healthcare provider right away if you or your family members notice any of the following symptoms, especially if they are new, worse, or worry you: thoughts about suicide or dying; attempts to commit suicide; depression; anxiety; feeling agitated or restless; panic attacks; irritability; aggression, anger, or violence; acting on dangerous impulses; an extreme increase in activity and talking; other unusual changes in behavior or mood; trouble sleeping.

CONTRAVE is not approved for use in children under the age of 18.

Do not take CONTRAVE if you have uncontrolled high blood pressure; have or have had seizures; use other medicines that contain bupropion such as WELLBUTRIN, WELLBUTRIN SR, WELLBUTRIN XL, APLENZIN and ZYBAN; have or have had an eating disorder called anorexia or bulimia; are dependent on opioid pain medicines or use medicines to help stop taking opioids, or are in opiate withdrawal; drink a lot of alcohol and abruptly stop drinking, or use medicines called sedatives (these make you sleepy), benzodiazepines, or anti-seizure medicines and stop using them all of a sudden; are taking or have taken medicines called monoamine oxidase inhibitors (MAOIs) in the past 14 days; or are allergic to any of the ingredients in CONTRAVE. Tell your healthcare provider about all of your medical conditions including if you have: depression or other mental illnesses; attempted suicide; seizures; head injury; tumor or infection of brain or spine; low blood sugar or low sodium; liver or kidney problems; high blood pressure; heart attack, heart problems, or stroke; eating disorder; drinking a lot of alcohol; prescription medicine or street drug abuse; are 65 or older; diabetes; pregnant or planning to become pregnant; or breastfeeding.

Tell your healthcare provider about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements.

CONTRAVE may cause serious side effects, including:

  • Seizures. There is a risk of having a seizure when you take CONTRAVE. The risk of seizure is higher in people who take higher doses of CONTRAVE, have certain medical conditions, or take CONTRAVE with certain other medicines. Do not take any other medicines while you are taking CONTRAVE unless your healthcare provider has said it is okay to take them. If you have a seizure while taking CONTRAVE, stop taking CONTRAVE and call your healthcare provider right away.

  • Risk of opioid overdose. Do not take large amounts of opioids, including opioid-containing medicines, such as heroin or prescription pain pills, to try to overcome the opioid-blocking effects of naltrexone. This can lead to serious injury, coma, or death.

    Get emergency medical help right away if you take opioids and you:

    • have trouble breathing
    • become very drowsy with slowed breathing
    • have slow, shallow breathing
    • feel faint, very dizzy, confused, or have unusual symptoms
  • Sudden opioid withdrawal. People who take CONTRAVE must not use any type of opioid including street drugs, prescription pain medicines, cough, cold, or diarrhea medicines that contain opioids, or opioid dependence treatments, for at least 7 to 10 days before starting CONTRAVE. Using opioids in the 7 to 10 days before you start taking CONTRAVE may cause you to suddenly have symptoms of opioid withdrawal when you take it. Sudden opioid withdrawal can be severe, and you may need to go to the hospital. Tell your healthcare provider you are taking CONTRAVE before a medical procedure or surgery.
  • Severe allergic reactions. Stop taking CONTRAVE and call your healthcare provider or go to the nearest hospital emergency room right away if you have any of the following signs and symptoms of an allergic reaction: rash, itching, hives, fever, swollen lymph glands, painful sores in your mouth or around your eyes, swelling of your lips or tongue, chest pain, or trouble breathing.
  • Increases in blood pressure or heart rate. Some people may get high blood pressure or have a higher heart rate when taking CONTRAVE. Your healthcare provider should check your blood pressure and heart rate before you start taking, and while you take CONTRAVE.
  • Liver damage or hepatitis. Stop taking CONTRAVE and tell your healthcare provider if you have any of the following symptoms of liver problems: stomach area pain lasting more than a few days, dark urine, yellowing of the whites of your eyes, or tiredness. Your healthcare provider may need to stop treating you with CONTRAVE if you get signs or symptoms of a serious liver problem.
  • Manic episodes. Bupropion can cause some people who were manic or depressed in the past to become manic or depressed again.
  • Visual problems (angle-closure glaucoma). Signs and symptoms may include: eye pain, changes in vision, swelling or redness in or around the eye. Talk with your healthcare provider to find out if you are at risk for angle-closure glaucoma and to get treatment to prevent it if you are at risk.
  • Increased risk of low blood sugar in people with type 2 diabetes mellitus who also take medicines to treat their diabetes (such as insulin or sulfonylureas). You should check your blood sugar before you start taking CONTRAVE and while you take CONTRAVE.

The most common side effects of CONTRAVE include nausea, constipation, headache, vomiting, dizziness, trouble sleeping, dry mouth, and diarrhea. These are not all of the possible side effects of CONTRAVE.

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch or call 1-800-FDA-1088.

Please see Full Prescribing Information, including Medication Guide, for CONTRAVE.

CONTRAVE® is a registered trademark of Currax Pharmaceuticals LLC. All other trademarks are the property of their respective owners.

© 2023 Currax Pharmaceuticals LLC. CON 1572-001 03/23

Are you living with type 2 diabetes? You might need emergency glucagon, too

2023-03-24T08:01:00

(BPT) – Pale skin, shakiness and sweating are just a few symptoms you might associate with hypoglycemia, which is known to be common in people with type 1 diabetes. But type doesn’t matter: People with type 2 diabetes that use insulin or sulfonylureas are at just as much risk.

Because there is a misconception that those living with type 2 diabetes are not prone to experience hypoglycemia, you may not have been provided all the facts about what it is, its symptoms, and how and when to treat it. It’s important to know that:

  • 1 in 5 people with type 2 diabetes experience one or more severe hypoglycemia events per year.
    • Hypoglycemia happens when blood glucose level falls below 70mg/dL and/or you begin to feel a range of physical and neurological symptoms, such as dizziness, shakiness, confusion, combative behavior or trouble answering questions. Things can progress quickly to severe hypoglycemia, which is potentially life-threatening.
  • Hypoglycemia requires immediate attention.
    • Untreated hypoglycemia can lead to loss of consciousness, seizure, coma, and death. You should work with your doctor to create a plan for managing it just in case it happens. Your plan should be equipped with things like glucose tabs, juice, and glucagon.
  • If you take insulin or sulfonylureas, you should have ready-to-use glucagon in your diabetes toolkit for low blood sugar emergencies.
    • Thought leaders in the diabetes space, the American Diabetes Association and the Endocrine Society acknowledge that
      • Anyone taking insulin or sulfonylureas is at high risk for hypoglycemia
      • Anyone taking insulin or sulfonylureas should have a prescription for ready-to-use glucagon
    • You need a safety net if you:
      • tried correcting with food or drink and it’s not working
      • are unable or unwilling to eat or drink
      • feel like passing out
      • have a seizure
  • The type of ready-to-use glucagon that you carry is important!
    • Emergency glucagon is typically administered by a third party — who might not be trained in its use — in a moment that may be stressful and cause anxiety. An intuitive, simple-to-administer tool is ideal.

Gvoke HypoPen® is ready-to-use rescue glucagon that can be used by anyone the moment it is needed, similar to rescue pens used for severe allergic reactions. It’s so simple to administer that in a study designed to simulate an emergency, 99 percent of people used it correctly. It can even be self-administered in certain situations.

If you are living with type 2 diabetes and take insulin or sulfonylureas, talk to your healthcare provider about your risk and adding Gvoke HypoPen® to your hypoglycemia treatment plan.

INDICATION AND SAFETY SUMMARY
GVOKE is a prescription medicine used to treat very low blood sugar (severe hypoglycemia) in adults and kids with diabetes ages 2 years and above. It is not known if GVOKE is safe and effective in children under 2 years of age.

WARNINGS

Do not use GVOKE if:

  • you have a tumor in the gland on top of your kidneys (adrenal gland), called a pheochromocytoma.
  • you have a tumor in your pancreas called an insulinoma.
  • you are allergic to glucagon or any other inactive ingredient in GVOKE.

GVOKE MAY CAUSE SERIOUS SIDE EFFECTS, INCLUDING:

High blood pressure. GVOKE can cause high blood pressure in certain people with tumors in their adrenal glands.

Low blood sugar. GVOKE can cause low blood sugar in certain people with tumors in their pancreas called insulinomas by making too much insulin in their bodies.

Serious allergic reaction. Call your doctor or get medical help right away if you have a serious allergic reaction including:

  • rash
  • difficulty breathing
  • low blood pressure

COMMON SIDE EFFECTS

The most common side effects of GVOKE in adults include:

  • nausea
  • vomiting
  • swelling at the injection site
  • headache

The most common side effects of GVOKE in children include:

  • nausea
  • low blood sugar
  • high blood sugar
  • vomiting
  • abdominal pain
  • headache
  • pain or redness at the injection site
  • itching

These are not all the possible side effects of GVOKE. For more information, ask your doctor. Call your doctor for medical advice about side effects. You are encouraged to report side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088.

BEFORE USING

Before using GVOKE, tell your doctor about all your medical conditions, including if you:

  • have adrenal gland problems
  • have a tumor in your pancreas
  • have not had food or water for a long time (prolonged fasting or starvation)
  • have low blood sugar that does not go away (chronic hypoglycemia)
  • are pregnant or plan to become pregnant
  • are breastfeeding or plan to breastfeed

Tell your doctor about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements.

HOW TO USE

  • Read the detailed Instructions for Use that come with GVOKE.
  • Use GVOKE exactly how your healthcare provider tells you to use it
  • Make sure your relatives, close friends, and caregivers know where you store GVOKE and how to use it the right way before you need their help.
  • Act quickly. Having very low blood sugar for a period of time may be harmful.
  • Your healthcare provider will tell you how and when to use GVOKE.
  • After giving GVOKE, your caregiver should call for emergency medical help right away.
  • If you do not respond after 15 minutes, your caregiver may give you another dose, if available. Tell your healthcare provider each time you use GVOKE. Low blood sugar may happen again after receiving an injection of GVOKE. Your diabetes medicine may need to be changed.

HOW TO STORE

  • Keep GVOKE in the foil pouch until you are ready to use it.
  • Store GVOKE at temperatures between 68°F and 77°F.
  • Do not keep it in the refrigerator or let it freeze.

Keep GVOKE and all medicines out of the reach of children.

For more information, call 1-877-937-4737 or go to www.gvokeglucagon.com

Please see the Full Prescribing Information for Gvoke.

· The type of ready-to-use glucagon that you carry is important!

Emergency glucagon is typically administered by a third party — who might not be trained in its use — in a moment that may be stressful and cause anxiety. An intuitive, simple-to-administer tool is ideal.

A Life Without Limits Despite a Rare Disease Diagnosis

2023-03-23T14:01:00

(BPT) – Patient Advocate and Former U.S. Congressman Gregg Harper Shares his Family’s Journey with Fragile X Syndrome and Discusses the Importance of Clinical Trials to Advance Treatment Options

It is said that as parents, we try to teach our children all about life. But ultimately children are the ones that teach their parents what life is all about. For former Congressman Gregg Harper that sentiment has become the driving force behind his political and patient advocacy platforms and his life’s work. For Gregg and his wife, Sidney, parenting their son, Livingston, and daughter, Maggie, has always been their number one priority. So, when they noticed Livingston’s milestone delays as an infant and toddler and then other signs of development delays, they began what would become one of the most challenging yet rewarding experiences of their lives — learning from Livingston along the way.

Over the course of four years, Gregg and Sidney ran from appointment to appointment, consulting countless experts and having Livingston tested and evaluated by pediatricians, neurologists, psychologists and every specialist in between. They were determined to find out what was happening with their son and there was no amount of time or energy that would stop them.

It was ultimately a stroke of luck that led to Livingston’s diagnosis with a rare neurological condition known as Fragile X syndrome. The Harpers’ neighbor was the head of special education for an area school district and had attended a seminar about developmental delays and special education. There she learned about a disorder known as Fragile X. When she returned home, she immediately shared what she learned with Gregg and Sidney thinking it could be the elusive diagnosis they were seeking for Livingston. Ultimately, genetic testing revealed that Livingston did indeed have Fragile X syndrome.

“When someone in your family is faced with a rare disease diagnosis such as Fragile X, and especially when it is your child, at first your world can seem like it’s collapsing,” said Gregg. “But after grieving what you thought ‘might have been,’ it is so important to remind yourself that a diagnosis does not have to define or limit your child’s life. As parents we chose to pour our energy into doing everything we could to ensure that Livingston could live the most fulfilling life possible.”

Fragile X is a genetic disorder that causes symptoms including, but not limited to, developmental delays, intellectual disabilities, learning and behavioral issues, physical abnormalities and anxiety. It is estimated that Fragile X affects 1 in 8,000–11,000 females and 1 in 4,000–7,000 males worldwide.1

During his younger years, Livingston tried many different medications based on what was available at the time. But unfortunately, their side effects created frustrations for Livingston and his parents. Over the years, he also received occupational therapy and speech therapy. While these interventions helped, Livingston continued to experience sensory overload issues and was prone to self-stimulatory behavior such as flapping his arms and hands when he was overstimulated.

“When Livingston was diagnosed and as he grew, there weren’t many treatment options available and we were committed to trying everything we could while also ensuring our child was still able to be who he was born to be,” said Gregg. “While Livingston never had the opportunity to participate in clinical trials studying investigational treatment options, we strongly encourage individuals to support research of investigational new therapies by participating in clinical trials.”

For Gregg, taking control started in early 2009, when he issued a public service announcement, as part of his political advocacy platform, declaring his commitment to ensuring increased awareness and funding to help families who are blessed with a child with Fragile X. Since then, he has worked with higher education institutions like Mississippi State University (MSU) to create inclusive programs within the higher education system that guide students with disabilities through a college career. Livingston benefitted from his father’s commitment and graduated from Mississippi State University in 2013 from the ACCESS Program. Then, in 2010, Gregg’s work with George Mason University (GMU) expanded to include the launch of an internship program with MASON LIFE students and six U.S. House of Representative offices in Washington, D.C.

“After Livingston’s diagnosis and watching him face the challenges of his disorder, my platform in Congress became an opportunity to help educate others about Fragile X and other intellectual disabilities,” said Gregg. “My son’s perseverance and our family’s commitment to providing him with every opportunity possible inspired me to advocate for the thousands of children and families struggling with the same or similar experiences.”

Over eight years, the special needs students in the Mason Life program at GMU and within Congress grew to work as interns across more than 300 congressional offices from both the U.S. House of Representatives and Senate. In December 2018, Gregg and Livingston were honored at a reception along with other student interns and learned the program was being renamed to “The Gregg and Livingston Harper Congressional Internship Program for Individuals with Intellectual Disabilities.”

Today, Livingston is 33 years old and doing well, despite continued social avoidance behaviors which he manages to the best of his ability. He has a job and regularly spends time with lifelong friends.

Gregg notes, “If my wife and I could give one piece of advice to parents of children with Fragile X or any intellectual disability it would be to never stop fighting for your child’s right to live a life without limits. After the devastation and disappointment, look for the opportunities to learn from your child’s journey and the community it can bring your child and family into.”

He concludes, “Livingston is an example of a child who has never given up despite his diagnosis and associated challenges. We’ve learned so much from him!”

To learn more about Fragile X syndrome and an ongoing clinical trial of an investigational treatment, visit FragileXHelp.com for more information.

Content sponsored and provided by Zynerba Pharmaceuticals, Inc. Gregg Harper has partnered with Zynerba to increase awareness of Fragile X syndrome and highlight the vital role of clinical trials in discovering and studying new investigational treatments for rare diseases.

1. https://fragilex.org/understanding-fragile-x/fragile-x-101/