How you can Be the One to save the life of one veteran

2022-09-13T00:01:00

(BPT) – September is National Suicide Prevention Month, and there has never been a more pressing time to discuss the number one issue facing veterans today: suicide. According to the National Veteran Suicide Prevention Annual Report, approximately 17 veterans take their own lives every day — totaling 6,000 each year. In fact, the rate of suicide for veterans is nearly double than that of civilian adults. And unfortunately, it’s not just veterans who are facing this crisis. Active-duty service members struggle, too. Suicide rates among active-duty soldiers in the Army have reached their highest point since 1938.

What’s also apparent is that the stigma around asking for help is the greatest barrier. Far too many service members are suffering in silence. As a nation, it’s vital that we make it OK for veterans to ask for help when they need it.

Despite this harrowing challenge, there is hope. That’s why The American Legion is leading the charge to end veteran suicide and destroy the stigma around asking for help. The organization’s Be the One initiative aims to create generational change by building awareness around the problem of veteran suicide. It also empowers everyone, military and civilian alike, to Be the One who begins thinking, talking and acting to save just one life.

The multi-year campaign will work to normalize asking for mental health care, provide peer-to-peer support and resources in local communities, and create safe spaces for veterans to be open about their struggles.

“The American Legion is asking you to ‘Be the One’. And by you, I include every one of us, military and civilian alike,” said Vincent J. Troiola, national commander for The American Legion. “We all need to ‘Be the One’ to begin thinking, talking and acting to save just one life. Together, we can all make a difference in the lives of veterans.”

As the largest veterans service organization in the world, The American Legion has a history of tackling the most important issues and challenges facing veterans. Veteran suicide may be the biggest challenge yet, but anyone can Be the One to help save just one veteran.

What can you do to help?

Reaching out and making a connection with a veteran you know can make all the difference. Having someone to talk to can help that veteran feel cared for, seen and heard. You can make a difference today by just reaching out to any veteran you know and asking them how they’re doing. Sometimes just knowing there’s someone to listen can make all the difference.

You can also encourage a veteran in your life to be open about their struggles. Think about it: Veterans have been trained as warriors to accept every challenge and still be strong, no matter what. Unfortunately, that training can also lead to avoiding asking anyone for help. Many veterans fear being seen as weak if they’re struggling. And while heroism is usually celebrated within the context of combat, sometimes the most heroic thing a veteran may ever do for themselves or their loved ones is admit they need help. That’s when family, friends, comrades and organizations can step in to connect the veteran with care.

“The stigma of asking for help keeps far too many veterans from accessing the mental health resources they need to thrive,” said David Rudd, Ph.D. and director of the Rudd Institute for Veteran and Military Suicide Prevention. “All it takes is one person reaching out to a veteran in their life to help break down those barriers to treatment and give them the confidence to ask for help.”

If you’re a veteran in crisis, or if you have concerns about someone else, dial 9-8-8. Press 1 to confidentially connect with a real person qualified to support veterans.

Today, and every day, take a moment to learn about the challenges facing our nation’s veterans and do your part to help someone you know. We all have the opportunity to Be the One to save just one life.

Visit BeTheOne.org to sign up for updates and to learn more about how you can help.

Tips for patients and healthcare professionals to help close the ‘insomnia conversation gap’

2022-09-12T08:01:00

(BPT) – For approximately 25 million American adults, insomnia is an unfortunate and ever-present reality, impacting a person’s ability to sleep and creating debilitating repercussions within their daily life.1 While often thought of as only a nighttime problem, insomnia also impacts functioning during the day, affecting concentration, mood, energy levels, relationships, work-life balance — even leading to more serious health consequences such as depression, cardiovascular disease, type 2 diabetes, substance abuse and dementia.2-6

Despite these impacts, roadblocks preventing people from receiving the insomnia care they deserve include a widespread dissatisfaction with treatment options and a belief that insomnia is not a real disorder worthy of medical attention, but rather a personal problem for people to deal with on their own. The problem is further exacerbated by the fact that healthcare professionals (HCPs) do not often ask patients about how their lack of sleep is affecting their day, thus leaving out a critical part of the conversation.7

To start improving the realities for people with insomnia and addressing the unmet need, The Alliance for Sleep, a newly formed committee of HCPs and sleep experts, recently conducted the Wake Up America: The Night & Day Impact of Insomnia Survey — with the goal of understanding how patients and healthcare providers view insomnia and currently available treatments. The survey of 1,001 adults with trouble sleeping, 300 primary care physicians and 152 psychiatrists explored the complexities of insomnia, highlighting several key areas where change is needed.7

The survey found that 70% of people with trouble sleeping (PWTS) are desperate to find a solution that helps them get quality sleep — although many (57%) are not discussing their sleep troubles with their providers.7 You may be wondering, how is this possible? Simply put, they aren’t being asked about it. In fact, when asked about whether their doctor asks explicitly about their sleep health, only 27% of PWTS reported always having these conversations during routine visits.7 This resulting ‘insomnia conversation gap’ makes it difficult for patients to feel comfortable opening up to their providers as it relates to their sleep, leaving many to believe prematurely that there are limited opportunities to receive care.

“The results from the Wake Up America survey pull back the proverbial curtain on a longstanding disconnect that exists in insomnia care,” said Dr. Ruth Benca, co-chair of The Alliance for Sleep. “Equipped with these insights, it’s my hope that we can help initiate critical patient and HCP conversations in order to dispel misconceptions and identify effective and appropriate treatment options.”

To create an atmosphere where patients and HCPs can have more productive conversations, The Alliance for Sleep offers the following advice for patients:

  • Be more open and honest with their HCPs about what they are experiencing in relation to their sleep.
  • Start the conversation with their HCP around sleep, discussing the quality and quantity of sleep.
  • Share experiences not only from the nighttime, but also daytime impacts from trouble sleeping, including:
    • Decreased productivity at work
    • Difficulty focusing
    • Cancelling social plans
    • Trouble completing daily chores or tasks
    • Day-to-day lower energy and fatigue
  • Lean on resources to help facilitate a productive dialogue. Jumpstart the conversation with the help of a discussion guide.

The Alliance for Sleep also lays out suggestions to HCPs, to help initiate productive conversations with patients:

  • Proactively ask about patients’ sleep, even if they do not mention experiencing trouble sleeping
  • Expand the conversation around sleep to also ask about daytime functioning related to sleep
  • Revisit and discuss patients’ insomnia treatment plans

If you are experiencing trouble sleeping, talk to your healthcare professional, and visit www.WakeUpAmericaSurvey.com to learn more about the survey’s findings.

Sponsored by Idorsia U.S.

References

1 Bhaskar S, Hemavathy D, Prasad S. Prevalence of chronic insomnia in adult patients and its correlation with medical comorbidities. J Family Med Prim Care. 2016;5(4):780-784. doi:10.4103/2249-4863.201153.

2 Roth T. Insomnia: Definition, prevalence, etiology, and consequences. J. Clin. Sleep Med. 2007;15((Suppl. S5)):S7–S10. doi: 10.5664/jcsm.26929.

3 Olfson M, Wall M, Liu SM, Morin CM, Blanco C. Insomnia and Impaired Quality of Life in the United States. J Clin Psychiatry. 2018 Sep 11;79(5):17m12020. doi: 10.4088/JCP.17m12020.

4 Doghramji K. The epidemiology and diagnosis of insomnia. Am J Manag Care. 2006 May;12(8 Suppl): S214-20. PMID: 16686591.

5 de Almondes KM, Costa MV, Malloy-Diniz LF, Diniz BS. Insomnia and risk of dementia in older adults: Systematic review and meta-analysis. J Psychiatr Res. 2016 Jun;77:109-15. doi: 10.1016/j.jpsychires.2016.02.021. Epub 2016 Mar 8. PMID: 27017287.

6 Diagnostic and Statistical Manual of Mental Disorders. Washington, DC: American Psychiatric Association Publishing; 2022.

7 Idorsia Data on File

Survey: Impact of OFF Time on People With Parkinson’s Disease and Their Care Partners

2022-09-12T07:31:00

(BPT) – Survey Assessment: Impact of OFF Time on People With Parkinson’s Disease and Their Care Partners

The Parkinson & Movement Disorder Alliance (PMD Alliance) and Neurocrine Biosciences conducted a survey to uncover the awareness among people with PD and their care partners regarding the occurrence and impact of OFF time and available adjunctive treatments to address its symptoms.

Baby Treated for Rare Disease Shortly After Birth Reaching New Milestones

2022-09-11T23:01:00

(BPT) – When Jessica and Brad first brought their baby, Waylon, home from the hospital after four days in the NICU, they thought they were in the clear.

Unfortunately, just one day after the family’s return home, a geneticist called with devastating news from his newborn screening results: Waylon had spinal muscular atrophy (SMA), and follow-up testing revealed that it would most likely be Type 1. Without treatment, doctors told the new parents that Waylon was unlikely to make it to his second birthday.

SMA is a rare, progressive disease that, left untreated in its most severe forms, robs infants of their ability to walk, swallow and even breathe.1 It is caused by the lack of a functional survival motor neuron 1 (SMN1) gene, which results in the irreversible loss of motor neurons. Diagnosing and treating SMA quickly is crucial to stopping progression of the disease.

Jessica and Brad immediately met with Waylon’s care team to discuss treatment options and see what would be best for him. Fortunately, treatment for SMA has advanced significantly in the past decade, and there are now three FDA approved options available. Patients and caregivers should talk to their doctor about options before deciding what is right for them.

“When we were talking to the neurologists about what to do, they told us we have to go with what treatment option we think is best,” said Jessica. “They went over everything, how each one was administered, treatment regimens, what we could expect and available data. We talked to his team and went with what we thought was the best fit for Waylon.”

Preferring a one-time treatment option, the parents decided to move forward with Zolgensma® (onasemnogene abeparvovec-xioi), a gene therapy delivered through an intravenous infusion.2 Approved in the U.S. in May 2019 for children less than 2 years old with SMA, Zolgensma targets the genetic root cause of the disease by replacing the function of the SMN1 gene, halting disease progression. Clinical data for Zolgensma reinforce the transformational benefit when used early. The SPR1NT study evaluated the efficacy and safety of ZOLGENSMA in presymptomatic patients younger than 6 weeks of age diagnosed with SMA, with 2 or 3 copies of the SMN2 backup gene. All 14 patients with 2 copies of SMN2 could sit independently by 18 months of age, and all 15 patients with 3 copies of SMN2 could stand alone by 24 months of age.3,4

Before and after the Zolgensma infusion, Waylon received an oral corticosteroid. All children treated with Zolgensma need to receive an oral corticosteroid starting the day before infusion, and then after infusion for at least two months or longer depending on their liver function exams and labs.2 In addition, baseline and follow-up tests are required for at least three months post-infusion. Zolgensma has a risk of acute serious liver injury and acute liver failure, and in clinical trials the most common side effects were elevated liver enzymes and vomiting. Please see additional Important Safety Information below and accompanying Full Prescribing Information.

At just 27 days old, Waylon received the one-time gene therapy.

“We were drawn to Zolgensma because it’s a one-time dose that treats the genetic root cause of the disease,” said Jessica. “When we walked out of the hospital after he was treated, it was a relief to know Waylon now had a working copy of the gene he needed.”

Now a year after his Zolgensma treatment, Waylon is reaching milestones that would not have been possible for children with SMA less than a decade ago. He loves rolling towards his toys during playtime, is sitting all on his own, and lately has been learning how to use his walker to get around.

“We find ourselves celebrating the smallest milestones,” explained Jessica. “The fact that he can’t sit still because he wants to be able to move makes me happy. And while I get a little aggravated when he throws food on the ground at restaurants, I’m so thankful that he can do that. The fact that Waylon was diagnosed with SMA so quickly after birth, and that he was treated so soon after that, changed his future.”

For more information about SMA and the importance of early diagnosis and treatment, visit ActOnSMA.org.

Results and outcomes vary among children based on several factors, including how far their SMA symptoms have progressed prior to receiving treatment.

Indication and Important Safety Information for ZOLGENSMA® (onasemnogene abeparvovec-xioi)

What is ZOLGENSMA?
ZOLGENSMA is a prescription gene therapy used to treat children less than 2 years old with spinal muscular atrophy (SMA). ZOLGENSMA is given as a one-time infusion into a vein. ZOLGENSMA was not evaluated in patients with advanced SMA.

What is the most important information I should know about ZOLGENSMA?

  • ZOLGENSMA can increase liver enzyme levels and cause acute serious liver injury or acute liver failure.
  • Patients will receive an oral corticosteroid before and after infusion with ZOLGENSMA and will undergo regular blood tests to monitor liver function.
  • Contact the patient’s doctor immediately if the patient’s skin and/or whites of the eyes appear yellowish, if the patient misses a dose of corticosteroid or vomits it up, or if the patient experiences a decrease in alertness.

What should I watch for before and after infusion with ZOLGENSMA?

  • Infections before or after ZOLGENSMA infusion can lead to more serious complications. Contact the patient’s doctor immediately if you see any signs of a possible infection such as coughing, wheezing, sneezing, runny nose, sore throat, or fever.
  • Decreased platelet counts could occur following infusion with ZOLGENSMA. Seek immediate medical attention if the patient experiences unexpected bleeding or bruising.
  • Thrombotic microangiopathy (TMA) has been reported to occur approximately one week after ZOLGENSMA infusion. Caregivers should seek immediate medical attention if the patient experiences any signs or symptoms of TMA, such as unexpected bruising or bleeding, seizures, or decreased urine output.

What do I need to know about vaccinations and ZOLGENSMA?

  • Talk with the patient’s doctor to decide if adjustments to the vaccination schedule are needed to accommodate treatment with a corticosteroid.
  • Protection against respiratory syncytial virus (RSV) is recommended.

Do I need to take precautions with the patient’s bodily waste?
Temporarily, small amounts of ZOLGENSMA may be found in the patient’s stool. Use good hand hygiene when coming into direct contact with bodily waste for 1 month after infusion with ZOLGENSMA. Disposable diapers should be sealed in disposable trash bags and thrown out with regular trash.

What are the possible or likely side effects of ZOLGENSMA?
The most common side effects that occurred in patients treated with ZOLGENSMA were elevated liver enzymes and vomiting.

The safety information provided here is not comprehensive. Talk to the patient’s doctor about any side effects that bother the patient or that don’t go away.

You are encouraged to report suspected side effects by contacting the FDA at 1-800-FDA-1088 or www.fda.gov/medwatch, or Novartis Gene Therapies, Inc. at 833-828-3947.

Please see the Full Prescribing Information.

References

  1. Sugarman EA, Nagan N, Zhu H, et al. Pan-ethnic carrier screening and prenatal diagnosis for spinal muscular atrophy: clinical laboratory analysis of >72,400 specimens. Eur J Hum Genet. 2012;20(1):27-32. https://doi.org/10.1038/ejhg.2011.134
  2. ZOLGENSMA [prescribing information]. Bannockburn, IL: Novartis Gene Therapies, Inc; 2021.
  3. Strauss KA, Farrar MA, Muntoni F, et al. Onasemnogene abeparvovec for presymptomatic infants with two copies of SMN2 at risk for spinal muscular atrophy type 1: the Phase III SPR1NT trial. Nat Med. 2022;28:1381-1389.
  4. Strauss, KA, Farrar, MA, Muntoni, F. et al. Onasemnogene abeparvovec for presymptomatic infants with three copies of SMN2 at risk for spinal muscular atrophy: the Phase III SPR1NT trial. Nat Med. 2022;28:1390-1397

© 2022 Novartis Gene Therapies, Inc.

Bannockburn, IL 60015

US-ZOL-22-0101 08/2022

Why HIV Testing Should Be an Important and Normal Part of Your Self-Care Routine

2022-09-09T14:01:00

(BPT) – The COVID-19 pandemic introduced unprecedented challenges and altered ways of living across the globe. Now, more than two years later, the effects are still felt widely. Many non-emergent clinical services were limited or suspended during the early stages of the COVID-19 pandemic in the US, which may have adversely impacted epidemics of public health importance, such as HIV, and access to testing, which is a cornerstone of prevention efforts.[1] While adjusting to a new normal, it’s time to reprioritize making routine HIV screening a normal and important part of self-care.

In 2019, an estimated one in eight people living with HIV in the US were unaware of their status,[2] and in 2016 nearly 80 percent of new HIV infections were transmitted by people who didn’t know they had HIV or were not in care.[3] Further, HIV diagnoses have greatly declined during the COVID-19 pandemic.[4] According to a recent analysis, the number of Centers for Disease Control and Prevention (CDC) funded HIV tests conducted by the country’s health departments plunged by nearly half from 2019 to 2020.[5] Another report indicates that HIV diagnoses dropped by 17% from 2019 to 2020, after declining by no more than 3% annually since 2016, likely due to disruptions to HIV-related services caused by the COVID-19 pandemic.4

To help normalize HIV testing, Gilead launched Press Play, a resource to encourage routine testing as a regular part of self-care and help deter negative emotions or stigma associated with HIV screenings. HIV testing is for everyone – the CDC recommends people between the ages of 13 and 64 get tested for HIV at least once as part of routine health care, and some people may benefit from getting tested more often.[6] Press Play provides information about what you can expect during an HIV test, next steps to take after a test, and other tools – including options for finding an HIV testing site or ordering a free at-home test – to help make test taking easier.

“With Press Play, our goal is to normalize routine HIV screening as an important part of self-care by providing resources to help you get tested and information on your options once you have your test results – no matter the outcome,” said David Malebranche, MD, MPH, Senior Director of Global HIV Medical Affairs at Gilead. “Once you know your HIV status, you’re on your way to moving forward. You can connect with your HCP to understand options to help prevent or treat HIV.”

While it’s natural to feel nervous about getting tested for HIV, no matter the test result, there is power in knowing your HIV status. By knowing your status, you are better equipped to discuss prevention or treatment options with a health care provider. Although there is currently no cure for HIV, there are several options available to help prevent or treat HIV.

The only way to know your HIV status is through testing. It’s time to reintroduce testing into self-care routines and work together to help put an end to the HIV epidemic. To learn more about HIV testing, find HIV testing sites, or order a free at-home test, visit Press Play’s website at hivtestnow.com.


[1] Moitra E, et al. Impact of the COVID-19 pandemic on HIV testing rates across four geographically diverse urban centres in the United States: An observational study. Lancet Reg Health Am. 2022;7:100159. doi:10.1016/j.lana.2021.100159

[2] Centers for Disease Control and Prevention (CDC). CDC fact sheet: HIV in the United States and dependent areas. Accessed May 31, 2022. https://www.cdc.gov/hiv/pdf/statistics/overview/cdc-hiv-us-ataglance.pdf

[3] CDC. Gaps in HIV testing and treatment hinder efforts to stop new infections. Accessed March 18, 2019. https://www.cdc.gov/media/releases/2019/p0315-gaps-hinder-hiv-testing.html

[4] CDC. HIV Surveillance Report, 2020; vol. 33. Accessed May 31, 2022. https://www.cdc.gov/hiv/library/reports/hiv-surveillance/vol-33/index.html

[5] Patel D, et al. HIV testing services outcomes in CDC-funded health departments during COVID-19. J Acquir Immune Defic Syndr. 2022. doi:10.1097/QAI.0000000000003049

[6] “Should I get tested for HIV?” Centers for Disease Control and Prevention. HIV: Getting tested. Accessed May 31, 2022. https://www.cdc.gov/hiv/basics/hiv-testing/getting-tested.html

Worried about your loved one? How to help veterans at risk of suicide

2022-09-09T08:07:00

(BPT) – Returning to civilian life can be difficult for veterans, especially if they struggle with mental health. Too often, veterans experiencing mental health challenges are embarrassed to ask for help. This fear of what others will think is a stigma that often prevents them from seeking care.

According to the latest Annual Warrior Survey from Wounded Warrior Project® (WWP), about 1 in 5 WWP warriors report difficulty or delays in receiving or continuing professional mental health care. Of those warriors, 2 in 3 feel embarrassed or ashamed about getting such care.

Stigma is real and can profoundly affect veterans struggling with emotional issues. This is especially concerning given the prevalence of suicide among veterans. According to the most recent data from the U.S. Department of Veterans Affairs, an estimated 17 veterans die each day by suicide. In addition, WWP’s survey found nearly 1 in 4 WWP warriors had suicidal thoughts in the past 12 months. Of the warriors who reported those suicidal thoughts, most (70%) had them in the last two weeks.

While no one can wipe out stigma or defeat suicide overnight, you can help veterans and other loved ones in your life who are struggling. Check out these five tips that you can use to help a veteran in crisis and prevent suicide.

1. Spot the signs

If you’re worried about a loved one, you should watch for words or actions that suggest suicidal thoughts. It can be as direct as a veteran saying they “want to die” or that others “would be better off without them.” Other signs are indirect but equally important to notice.

According to the National Institute of Mental Health, some other signs include:

  • Using substances like drugs and alcohol more often
  • Eating or sleeping less
  • Extreme mood swings
  • Dangerous risk-taking
  • Withdrawing from friends
  • Saying goodbye to loved ones, giving away important items or making a will
  • Researching ways to die and making a plan to take their life

Someone in crisis may not exhibit all these signs, but if your friend or family member displays any of them, there is a good chance they are struggling and need support.

2. Initiate conversation directly

It can be scary, but initiating a direct conversation about suicide is often vital to getting someone the support they need. You may be reluctant to start the conversation for fear that the person may not be contemplating suicide and that you’ve given them the idea by asking about it, but that couldn’t be farther from the truth.

“Asking someone if they want to kill themselves won’t put the idea into their head or make them more likely to die by suicide,” said Erin Fletcher, Psy.D., director of WWP’s Warrior Care Network. “Veterans struggling with suicide are looking for a lifeline, so you directly asking if they’re having suicidal thoughts could be what prevents them from going through with a plan.”

You can ease into the conversation by saying, “I’m concerned about you,” “I’ve noticed you’ve withdrawn,” or “You don’t seem like yourself.” However, make sure to ask them directly if they’re thinking of taking their life.

3. Keep calm and ask questions

If someone confides in you that they’re having suicidal thoughts, keep calm. It can be difficult to not under- or overreact. Staying calm will help create a safe space for veterans to share more about their struggles. It can be hard to know what to say when someone tells you they want to take their life.

To start, thank them for being vulnerable and sharing their experience with you. Next, encourage them to keep talking. You can do this by asking follow-up questions. According to the American Foundation for Suicide Prevention, some helpful things to ask someone contemplating suicide include:

  • “How long have you felt this way?”
  • “When did these suicidal thoughts start?”
  • “How often do you have these thoughts?”
  • “Do you want to go to a hospital?”
  • “What do you need to feel safe?”

If at any point a loved one wants to stop talking about their situation, let them know that you want to support them and that they can talk more later.

4. Let them know they’re not alone

One of the most difficult aspects for veterans thinking of suicide is the feeling of isolation and the burden of dealing with their mental health challenges alone. Remind them that you care about them and that they have support and resources available. Offer to connect them right away with professionals who can help them on their path to recovery.

5. Make the connection

Do your best to connect your loved one right away to a resource that can help with the next step in their recovery. The resource you choose may depend on the severity of the situation. Examples include:

  • If someone is in imminent danger of harming themselves, call 911 or take them to the closest emergency room.
  • If you are in crisis or concerned about a loved one, call the Veterans Crisis line at 988 and press “1” or text 838255 to connect with a crisis counselor 24/7, 365 days a year. They can coach you through the situation or speak directly with your loved one to figure out the next steps and resources in your area. Everyone can play a crucial role in helping a person who’s facing thoughts of suicide connect to this free support and care. You can put them on the path to hope. Help is free, and only a phone call away.
  • If a veteran is not in immediate danger but admits to struggling with suicidal thoughts, WWP has free services that may help. These include peer support groups to connect them with other veterans, rehabilitative workshops, and professional services to help handle issues including post-traumatic stress disorder (PTSD), military sexual trauma (MST), traumatic brain injury (TBI), career or financial struggles, or to simply start feeling like themselves again. Thanks to donors, these services are cost-free for post-9/11 wounded veterans and their families.

By spotting the signs, initiating the conversation directly, and connecting someone quickly to resources, you’re playing a vital role in helping someone get the support they deserve. You are not alone, and neither is your loved one.

Learn more about WWP’s resources and how you can help a veteran in crisis.

Father Living with ALS Shares 5 Tips for Coping and “Embracing Your Now”

2022-09-09T12:01:00

(BPT) – For U.S. Air Force Veteran and father, Juan Reyes, being diagnosed with amyotrophic lateral sclerosis (ALS) was a “devastating blow.” Reyes, who had just adopted three children, knew his diagnosis would redefine their lives. According to the National Institutes of Health, ALS — more commonly known as Lou Gehrig’s Disease — is an incurable, progressive disease of the nervous system that leads to muscle weakness and eventual loss of function including walking, speaking, swallowing, eating and breathing. Veterans, like Reyes, are twice as likely to be diagnosed with ALS than those who have not served in the military. Despite the difficult news, Reyes and his family made a conscious choice to “embrace their now” and live each day with purpose and happiness.

“We had a choice to make — allow ALS to consume us, or live our lives boldly,” says Reyes. “We could have lost control of our future had we decided to let ALS be our compass. This disease infiltrates many aspects of our lives, yet we simply don’t let it consume us.”

To fully “embrace their now,” Reyes and his family have decided to create unforgettable memories together by traveling and going on adventures with each other. In fact, together with his wife and caregiver, Meg, Reyes is taking a series of RV trips across the U.S. this year to help spread awareness of ALS and meet others living with the disease. Acting as an advocate and mentor, Reyes is open about his experience with ALS, sharing what he’s learned along his journey, to help encourage others to “embrace their now.”

Reyes and his family are focused on making the most of every moment they have with each other, and they encourage others living with this fatal disease to do the same. Here are five tips from Reyes that help him cope:

1. Live in the present

“Embrace your now,” without worrying too much about the future. This mindset can help you “take life by the horns” and enjoy the time you have with your loved ones.

“Everything else takes a back seat to being present. This is not complicated, but it can be difficult for some,” Reyes says. “Being present means exactly that, nothing more: visiting, helping, learning. Enjoy your life the best you can.”

2. Be open about ALS

Don’t avoid difficult topics when it comes to ALS, but instead, have very honest, real conversations with your family — even with children.

“Our family is very pragmatic — we just say that ALS is something Dad has,” Reyes explains. “My wife and I choose to remain in control by talking about and communicating all aspects of this disease with our children.”

3. Accept support from others

ALS brings a multitude of changes for the person living with the disease and their families. Willing to be open and accept help and support from others can make a huge difference.

“ALS impacts your physical, emotional and mental health,” Reyes says. “But there is one aspect that can impact all of the above: self-imposed isolation. Accepting support from family, friends and my community has helped reduce my feelings of isolation.”

4. Partner with healthcare providers

Stay actively engaged with your healthcare team. Communicate frequently and discuss treatment options with your providers so they can help to find the best treatment options for you.

“Once the gravity of ALS settles in, allow yourself to catch your breath, then start planning with your healthcare team,” advises Reyes. “Your plan should encompass solutions for daily living, long-term arrangements, and treatment options.”

“When the prescription drug RADICAVA® (edaravone) came up, we discussed pursuing this course. My doctor and I reviewed the benefits and risks of treatment, and while RADICAVA is not a cure, it has been shown to help slow the decline of physical function in a medical study,” says Reyes. “I felt comfortable moving forward with this option, but I encourage anyone diagnosed with ALS to actively work with their doctor on a treatment plan that’s right for them.”

RADICAVA® and RADICAVA ORS® (edaravone) are indicated for the treatment of ALS. Do not receive RADICAVA® or RADICAVA® ORS if you are allergic to edaravone or any of the ingredients in RADICAVA and RADICAVA ORS. See IMPORTANT SAFETY INFORMATION below.

5. Share Your ALS Story

People in the ALS community have a lot to share. Questions and fears, as well as stories of courage and hope. Whether someone living with ALS is searching for more answers about the disease, or for new ways to live each day with purpose, hearing from others with similar experiences may make a world of difference. The Share Your Story program allows real people living with ALS and/or their caregivers to share their own experiences of living with ALS and why treatment with RADICAVA® (edaravone) matters to them.

Sharing your story could help you cope with ALS through self-expression. “Releasing my thoughts, feelings and emotions about the disease has given me a sense of relief,” Reyes noted.

Whether you Share Your Story by video or post, you could help others who live with ALS feel like they’re part of a larger community of support and understanding.

“I share my story because I want more people living with ALS to feel inspired and to understand they are not alone,” says Reyes. “By sharing your story, you could make an impact on how others live with ALS, too.”

Interested in sharing your experience with others? Call a JourneyMateTM Resource Specialist toll-free 1-855-457-6968 or visit www.ShareYourALSStory.com to sign-up for a chance to share your story.

In addition to sharing his experiences online, Reyes will continue to share his story with others as he travels around the country. “I try to be as optimistic as possible. ‘How?’ you may ask? My answer is, ‘Why the heck not!’” said Reyes. “Let me be clear though, it is immensely difficult to maintain a healthy outlook with such a relentless disease. Just know you are not alone on this journey.”

This content is sponsored by Mitsubishi Tanabe Pharma America, Inc. (MTPA) and is intended for U.S. audiences only. Juan Reyes is an actual patient and is being compensated by MTPA.

IMPORTANT SAFETY INFORMATION

Do not receive RADICAVA (edaravone) or RADICAVA ORS (edaravone) if you are allergic to edaravone or any of the ingredients in RADICAVA and RADICAVA ORS.

Before you take RADICAVA or RADICAVA ORS, tell your healthcare provider about all of your medical conditions, including if you:

  • have asthma
  • are allergic to other medicines.
  • are pregnant or plan to become pregnant. It is not known if RADICAVA or RADICAVA ORS will harm your unborn baby.
  • are breastfeeding or plan to breastfeed. It is not known if RADICAVA or RADICAVA ORS passes into your breastmilk. You and your healthcare provider should decide if you will receive RADICAVA or RADICAVA ORS or breastfeed.

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

What are the possible side effects of RADICAVA and RADICAVA ORS?

RADICAVA and RADICAVA ORS may cause serious side effects, including hypersensitivity (allergic) reactions and sulfite allergic reactions.

  • Hypersensitivity reactions have happened in people receiving RADICAVA or taking RADICAVA ORS and can happen after your medicine has been given.
  • RADICAVA and RADICAVA ORS contain sodium bisulfite, a sulfite that may cause a type of allergic reaction that can be serious and life-threatening. Sodium bisulfite can also cause less severe asthma episodes in certain people. Sulfite sensitivity can happen more often in people who have asthma than in people who do not have asthma.
  • Tell your healthcare provider right away or go to the nearest emergency room if you have any of the following symptoms: hives; swelling of the lips, tongue, or face; fainting; breathing problems; wheezing; trouble swallowing; dizziness; itching; or an asthma attack (in people with asthma).

Your healthcare provider will monitor you during treatment to watch for signs and symptoms of all the serious side effects and allergic reactions.

The most common side effects include bruising (contusion), problems walking (gait disturbance), and headache.

These are not all the possible side effects of RADICAVA or RADICAVA ORS. Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088. You may also report side effects to www.fda.gov/medwatch or Mitsubishi Tanabe Pharma America, Inc. at 1-888-292-0058.

INDICATION

RADICAVA and RADICAVA ORS are indicated for the treatment of amyotrophic lateral sclerosis (ALS).

For more information, including full Prescribing Information, please visit www.RADICAVA.com.

5 simple wellness tips for a balanced lifestyle

2022-09-08T11:29:00

(BPT) – Are you looking to revamp your habits and focus on your wellness? You don’t have to follow a strict program or completely change your schedule to have a balanced lifestyle that benefits your physical, mental and emotional health. Small, simple changes can make a big difference. Before you know it, these changes will become habits and you’ll start to see the health benefits.

Not sure where to start? Check out these five simple tips for incorporating wellness into your everyday lifestyle.

1. Start the day with drinking water

Hydration is incredibly important to your health and metabolism, so start your morning off right with a tall glass of water. Overnight, your body loses about 1 liter of water while you sleep. As soon as you wake up, drink at least 16 ounces of water to rehydrate as soon as possible. Give it an even higher priority than your morning coffee. Forgetful? Consider setting an alarm or use a water tracker app on your phone to measure your intake.

To make this habit easier to incorporate into your life, jumpstart your day by jazzing up your water with fresh slices of lemon or cucumbers.

2. Keep snacks on hand

Who doesn’t love a good snack? If you feel sluggish and hungry between meals, keep better-for-you snacks on hand at home and on the go. A guilt-free snack can be something to look forward to after a workout or an indulgent pick-me-up during a stressful workday. Planning ahead keeps you in control of your snacking behaviors and less likely to reach for something you don’t really want.

Consider Voortman® Sugar Free Wafers and Cookies as a delectable snacking choice. Aside from being tasty, these snacks contain 0 grams of sugar and are made without high-fructose corn syrup, artificial colors, artificial flavors or trans-fats, so you can satisfy your cravings without sacrificing wellness.

“Consumers want great-tasting snacks that help them achieve a balance between health and indulgence,” said Adam Lisook, general manager of Voortman Cookies Limited. “We want to make it easier for people to choose a delicious snack anytime, anywhere that they can feel good about.”

With nearly 20 varieties of sugar-free cookies and wafers, you’re sure to find one (or even a few) Voortman favorites to keep at home, in the office and in the car for snacking.

3. Move more

The Centers for Disease Control and Prevention (CDC) recommends that adults get 150 minutes of moderate-intensity physical activity each week. That number may sound daunting, but you don’t have to do it all at once. In fact, it’s beneficial to get some physical activity every day, so you can easily meet this goal by doing 30 minutes of activity five days a week.

You don’t need to sign up for an exercise class or start training for a marathon. Start with a simple walk every day. Take a loop around your neighborhood in the morning before work or in the evening after dinner. Ask a work buddy to take a walk with you after lunch or invest in an under-desk treadmill if you don’t have time to leave the office. Over time, you may find that you want to extend your walks or take more than one a day.

4. Put down your phone and unwind

Stress can negatively impact your wellness. From your mood to productivity to health, stress can lead to serious burnout and even cause physical symptoms. It’s also important to spend less time staring at screens and create healthy boundaries with our devices.

To manage stress, make sure you incorporate moments of relaxation throughout the day. Silencing your phone and implementing practices like yoga and meditation into your routine can help you feel grounded and centered even on hectic days. During a busy day, find a few minutes to do some breathing exercises so you can restore some tranquility to a frantic morning or afternoon. If you’ve had a particularly tough week, consider planning an at-home spa day to unwind from the week’s stresses. You can start by lighting your favorite candles, listening to some calming music and taking a relaxing bubble bath.

5. Refresh your home and get organized

Believe it or not, your overall wellness is tied back to the organization in your life. Tidying up also can help you de-stress, give you energy to focus and improve your state of mind in various ways. Try taking inventory of items in your home and purging of things that are no longer necessary or needed.

A little effort to declutter can go a long way. Spending just a few minutes each day can help make your life healthier and happier!

Start small by building on good habits and practices and you’ll be surprised at how much your life can transform. Using these five simple wellness tips, you can be one step closer to creating a sustainable and balanced lifestyle.

With Back to School Comes Back to Sleep

2022-09-08T09:01:00

(BPT) – The start of the new school year is the perfect time to renew habits that keep students happy and healthy — including sleep. Unfortunately, many children and teens don’t get the amount of sleep they need to thrive at school. One culprit robbing many of their much-needed sleep is right on their phones — a recent survey from the American Academy of Sleep Medicine (AASM) found that 93% of Gen Z said they’ve lost sleep because they stayed up “past their bedtime” to view or participate in social media.

“Sufficient, healthy sleep is critical for students to excel in schoolwork, sports and extracurricular activities,” said AASM President Jennifer Martin, a licensed clinical psychologist. “When students get proper sleep, they are more optimistic, feel their best, and are better able to concentrate on their studies, while insufficient sleep can leave students exhausted and unprepared for school, making it harder to learn and pay attention.”

The need for sleep extends even beyond the years in school — a recent study in the Journal of Clinical Sleep Medicine discovered that poor sleep habits in adolescence contributed to poor health outcomes in adulthood.

How much sleep do kids really need?

For optimal health the AASM recommends that children 6-12 years old should sleep 9-12 hours on a regular basis, while teenagers 13-18 years of age should obtain 8-10 hours of sleep per night. For help figuring out the best bedtime for any age, use the bedtime calculator at: SleepEducation.org/healthy-sleep/bedtime-calculator.

Tips for helping kids fall and stay asleep at night

The sleep experts at AASM recommend following these practices to help your children (and their parents!) get the sleep they need.

1. Prepare ahead for schedule changes

Gradually shift bedtime and waking times by at least 15 minutes earlier every day until your child is on the right schedule. Aim for your child to go to bed and wake up at the same times each day, even on weekends or during school breaks.

3. Create a cool, quiet sleep environment

Keep the thermostat lower at night, and don’t overdo it with the blankets. If it’s hard for your child to fall asleep, try a fan or white noise machine to block out intermittent sounds.

4. Develop a relaxing bedtime routine

Find something that helps your child wind down and relax, like taking a warm bath or shower, reading a book or journaling to help them feel ready to go to sleep.

5. Restrict screen time before bed

These tips can help people of any age get to sleep easier:

  • Disconnect from devices and wind down for sleep by turning electronics off at least 30 minutes to an hour before bedtime.
  • Leave phones outside of bedrooms to avoid the temptation to use them. Use an alarm clock instead of a phone for waking up in the morning.

Want to learn more about how to help you and your children sleep better at night? Sleep providers from the AASM Public Awareness Advisory Committee will answer questions about establishing healthy student sleep routines for the school year during a Reddit Ask Me Anything (AMA) discussion at Reddit.com/r/AMA on Monday, Sept. 12, at 5 p.m. ET.

For more information about Student Sleep Health Week, additional events and tips, visit SleepEducation.org.

Seven health factors that may point to hATTR amyloidosis, an inherited rare disease

2022-09-06T12:01:00

(BPT) – Hereditary transthyretin-mediated (hATTR) amyloidosis is a rare, inherited and debilitating condition characterized by the buildup of amyloid deposits throughout multiple parts of the body, including the nerves, digestive system and heart.

While there are an estimated 50,000 people worldwide who live with hATTR amyloidosis, there could be more. This is because symptoms can be easily overlooked as they often mirror those of more common conditions, leading to misdiagnosis or delays in diagnosis. But, as symptoms of hATTR amyloidosis can worsen over time, timely diagnosis and management are critical.

Below, learn about some of the signs, symptoms and risk factors associated with hATTR amyloidosis:

1. Nerve symptoms

Numbness, tingling and/or a burning sensation in the hands or feet, commonly referred to as sensory neuropathy, often impacts people living with hATTR amyloidosis. Sensory neuropathy can spread throughout the body; for example, pain may escalate from the foot to the thigh or back over time.

2. History of carpal tunnel syndrome in both hands

Carpal tunnel syndrome in both hands is another common sign of hATTR amyloidosis and is characterized by numbness and tingling in the thumb, index finger and middle finger, as well as discomfort in the wrist and palm of the hand. It is often an early, potential red-flag sign of the disease. For many, carpal tunnel syndrome may be diagnosed earlier in life without suspicion of a deeper root cause.

3. Loss of movement control

Another symptom of hATTR amyloidosis is impaired balance and difficulty walking due to motor neuropathy. As the disease worsens, many people with hATTR amyloidosis may require walking aids, such as a cane, or a wheelchair.

4. Gastrointestinal issues

People living with hATTR amyloidosis may experience symptoms associated with autonomic neuropathy as well, such as alternating episodes of diarrhea and constipation, nausea, vomiting, or unintentional weight loss. These symptoms may occur at earlier stages of the disease, and often have a significant effect on quality of life. Like some of the other symptoms of the disease, they are often not recognized or diagnosed as being caused by hATTR amyloidosis when they first present.

5. Symptoms related to the heart

hATTR amyloidosis is also associated with heart-related issues, such as shortness of breath, fatigue, dizziness and leg swelling (edema). Damage to the heart muscle may eventually lead to heart failure.

6. Ethnic background

Although anyone can be at risk for hATTR amyloidosis, it is more common for certain ethnicities, such as people of African, Brazilian, French, Irish, Japanese, Portuguese and Swedish descent.

7. Family history

Because hATTR amyloidosis is an inherited condition, genetic testing can determine whether a person carries one of the more than 120 variants in the TTR (transthyretin) gene associated with hATTR amyloidosis. However, even though someone may inherit a TTR gene variant, it does not necessarily mean that they will develop symptoms of hATTR amyloidosis.

This is not a complete list of symptoms that may be experienced in people living with hATTR amyloidosis. The symptoms of hATTR amyloidosis can vary widely among people with the condition, and different symptoms may appear at different times for each person. To learn more about hATTR amyloidosis, speak with your doctor or visit hATTRbridge.com where you can access additional information, resources and support.

A message from Alnylam Pharmaceuticals, Inc. TTR-USA-00114