ALS Awareness Month: ALS Share-A-Thon!

With the help of Clearview Federal Credit Union and Pitt Athletics, The ALS Association Western Pennsylvania Chapter will be sharing ALS facts on social media during ALS Awareness Month. If we reach 250+ “shares” of these Share-A-Thon posts, Clearview Federal Credit Union will donate $2,500 to the Chapter!

This partnership all started when Fred, a person living with ALS, entered the Chapter into a Clearview Federal Credit Union contest last year. His heartwarming video won $1,000 for the Chapter and Clearview has supported us since. As a partner of both the Chapter and Clearview, bringing Pitt Athletics on board was an easy choice. Together, we hope to spread ALS Awareness far and wide with the ALS Share-A-Thon.

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Clearview Federal Credit Union

Why did Clearview Federal Credit Union choose to support The ALS Association?

Our vision at Clearview is “Helping People to Enjoy a Better Life,” and is what we live by and is the core of what we do with respect to our members, staff, and the community. This is in line with everything The ALS Association does every day – they strive to help provide a better life for those battling ALS. We are proud to be a part of these efforts and help raise awareness about ALS.

How are your employees/members spreading ALS Awareness?

As a new partner with The ALS Association of Western PA, we wanted to find a way to financially support the organization while utilizing our platforms to help raise awareness about ALS. Our teams worked together to find a way to accomplish this, and the ALS Share-A-Thon was born! We look forward to this event to share information with our community about ALS and to continuing this momentum with our participation in the upcoming CEO Soak.

What is your goal in supporting the ALS Share-A-Thon?  

Our goal in supporting the ALS Share-A-Thon is to continue raising awareness and providing funds to help The ALS Association of Western PA continue its mission to discover treatments and the cure for ALS and serve, advocate for, and empower people affected by ALS to live their lives to the fullest.

Share about Clearview’s values pertaining to community support.

 As a community  financial institution, we’re firmly rooted in the practice of helping our neighbors. Clearview supports the community through our Clearview Cares program that encompasses everything Clearview does in the community. This includes donating time, money and items to those in need.

Pitt Athletics

Why is Pitt Athletics and Pitt Men’s Basketball involved in the fight against ALS?

The Capel brothers and the Pitt Men’s Basketball team fight for their father, Felton Jeffrey Capel II, who was diagnosed in 2014 with ALS, and unfortunately passed on November 13, 2017 from the disease.

Pitt Panthers head coach Jeff Capel III, stated in his 2017 Players Tribune article,

Throughout my whole life, I’ve learned the importance of teams. Growing up, I was always around my dad’s basketball teams, and my own. And it’s because of the best team I’ve ever been on — the one of my dad, my mom, my brother and me — that I’ve become the man I am today. Now, the four of us are joining another team: the millions around the world fighting to find a cure for ALS. This is the biggest challenge we’ve ever faced, but we’re ready to face it the only way we know how: as a team.”

Jeff Capel III

31 Ways in 31 Days – How You Can Get Involved During ALS Awareness Month

May is #ALSAwareness Month! Awareness is critical to our vision of creating a world without ALS. The more people know about ALS, the more they get involved, and the more they support ALS advocacy, research, and care services. This kind of support gets us closer to finding potential treatments for ALS, and eventually a cure.

Here are 31 ways you can take part in ALS Awareness Month:

  1. Sign up to be an ALS Advocate
  2. Host a fundraising event
  3. Share this blog post and follow our Chapter Blog
  4. Follow us on Twitter
  5. Share your ALS story
  6. Become a volunteer
  7. Register for a Walk to Defeat ALS near you
  8. Subscribe to our YouTube channel
  9. Join Team Challenge ALS and participate in the Can’t Stop Won’t Stop Challenge
  10. Participate in the PA State Advocacy Day of Action on May 12
  11. Attend the lunch and learn advocacy info session on May 11
  12. “Like” and Follow us on Facebook
  13. Sign up to receive our chapter newsletter
  14. Join our planned giving program to: Leave a legacy and include our Chapter in a planned gift. Already have us listed as a beneficiary? Let us know!
  15. Get your ALS swag from our Swag Store
  16. Connect with us on LinkedIn
  17. Listen to the ConnectingALS podcast
  18. Attend our Caregiver Support Group
  19. Attend the new Living with ALS Meeting *only for those diagnosed with ALS
  20. Listen to this month’s Care Services Webinar
  21. Double your fight by asking if your company has an employee matching gift program
  22. Nominate your boss to participate in this year’s ALS CEO Soak
  23. Follow us on Instagram
  24. Become an ALS Social Media Ambassador
  25. Share an ALS facts post during our ALS Share-A-Thon – find these on Facebook and Instagram throughout the month of May!
  26. Attend the Walk to Defeat ALS kick off on May 15
  27. Donate to support the fight
  28. Become a corporate partner
  29. Start a Facebook fundraiser
  30. Participate in Youth Action Day on May 15
  31. Become an ALS Ally – $25 gets you a mug!

Here are some more ways you can help:

Educate

Many people, even if they’ve heard of ALS, know very little about what the disease is or what it is like. Share the graphics below with others—through social media, email, or even posting on your own blog or website. Full Graphic Kit Available HERE

Remember, every time you share or post something about ALS awareness, use the hashtag #ALSInThisTogether. This will make it easier for people to find more information on the topic, and increase the visibility of ALS Awareness Month.

Share

Throughout May, we’ll be publishing blog posts, highlighting recent advances in research, sharing inspirational stories from people living with ALS, and providing tools for people to learn more about the disease and get involved. An easy way to take part in spreading the word is to simply share these posts on your social media accounts. You can stay notified of each new post, and easily share them, by Signing up to become an ALS Social Media Ambassador (#ALSAmbassador)!

In addition, you can stay up to date by following us on Facebook , Instagram, and Twitter.

Donate

The biggest thing you can do in the fight against ALS is to help raise funds for research and essential services for people who have the disease.

Throughout the month of May, the Chapter is turning to its fellow western Pennsylvanians for help to continue these essential services and asks those to consider kicking off ALS Awareness Month by making a donation.

National Volunteer Month – Thank You Volunteers!

The contributions and impact of our volunteers is invaluable. From helping with event setup and logistics to mailings from the office, volunteers play an essential role to drive our mission forward. National Volunteer Month is an opportunity to recognize the impact of volunteer service and the power of volunteers in #OurALSCommunity. This year, in celebration, we asked volunteers to let us know why they offer their time to help those with #ALS. Here’s what they had to say.

“I volunteer for the ALS Association of Western PA because when my friend/co-worker (and Veteran) Melissa was diagnosed in 2016 at the very young age of 35, I knew I had to help somehow.  I am beyond sad to say that Melissa lost her battle at the end of November 2020, but I will keep volunteering and fighting for a cure because I know she would want me to continue so that others (especially Veterans who are twice as likely to get ALS)  do not have to suffer with ALS.  The staff at the ALS Association of Western PA are awesome and I feel lucky to know them and now call them my friends.  I live the volunteer spirit and I encourage others to volunteer for the ALS Association or another organization that you feel passionate about.  You always get more than you give when you volunteer!”

Karen Dunn

“When you go through a difficult period in life, you remember those that were there to hold you up throughout that time.  The ALS Association never left our side when my mother in law was living with ALS. They gave so much to my family, especially my mother in law, and  we will never forget all that they’ve done.  That is why we spend any time we can, helping them support those currently living with ALS.”

Amy Shaughnessy

I volunteer because I’ve seen the cycle of ALS, I’ve witnessed the impact the support that local ALS chapters have on those battling the disease, and I want to be a part of the organization that works tirelessly to develop treatment that not only allows people to live with ALS, but rids this world of the disease entirely.

Gregory Allison

I volunteer for three main reasons. One, to ALWAYS honor my step mom Jackie and raise awareness. Two,  l enjoy volunteering meeting new people and raise awareness. Finally,  l do it to support my dad, my best friend.

Alexis Freoni

I volunteer because I just want to see an end to ALS.  If I can give some of my free time to allow those living with ALS, as well as their caregivers, to have a glimpse of a future without having to battle every day of their life, then it will be worth every minute.  I volunteer to give speech to those who can no longer speak, a deep breath of air to those who cannot breath without assistance, a long walk to those who cannot walk on their own.  Every minute truly counts.

Sharon Squillario

I volunteer with the Western PA Chapter of The ALS Association in honor of and in memory of my father-in-law, F. Jeffrey Capel, Jr. who battled ALS until his last breath in November 2017. The ALS Association served as an amazing resource and support service for our family as we cared for him. Giving a few hours of my time each month is a small “thank you” in return for all the association has given to my loved ones.

Ashley Capel

“I volunteer because if you knew my mom, whom I walk for, you would know that volunteering is all she ever did. She was always doing for others, whether it was for the church, her friends, girl scouts or driving kids to baseball games. She never stopped being generous with her time while raising 7 kids.”

Carla Portash

Are you interested in volunteering with The ALS Association Western Pennsylvania Chapter?

Message from Surviving Spouse, Patty Letters: “We Can Look Back with No Regrets.”

The day my husband, Bob, was diagnosed with ALS he thanked my son and I for keeping it together for him. We did just that until the end. Now, we are able to look back on our ALS journey and have no regrets. During our three year battle, The ALS Association Western Pennsylvania Chapter gave us guidance and provided the tools we needed to live our lives and make lasting memories. That is why I am and will continue to be an ALS Ally.

The Letters Family

Our journey with The ALS Association Western Pennsylvania Chapter began when we attended our first symposium. When we arrived, we were scared and still in shock. After receiving information from a few speakers regarding many aspects of ALS, Marie Folino (Director of Care Services) came over and assured us that we would never be alone in this journey. Marie was so very instrumental in guiding us through the first steps we needed to take. She asked if Bob was a veteran and advised us to contact the VA for more resources. After that we would see Marie at the ALS clinic and she continued to be a wealth of information.  

Then I met Meghan, another social worker at the Chapter that helped with the support groups. Meghan was compassionate, caring, and she ran an awesome meeting. The caregivers support group was a game changer for me. That group is the reason why I have no guilt and no regrets. It was the best thing I ever did. I took away so much from these meetings by sharing my story, listening to others, learning from others, and grieving with others. The ALS Association gave us a community of people who understood. 

No question was too small or too big, and Meghan always let everyone weigh in on the conversation. ALS is such a personal journey. Sharing with others is difficult, but this group was my lifeline. I made some wonderful friends. These friends helped me realize just how important self-care was at the Chapter’s Caregiver Appreciation Weekend. This was a time where I could leave ALS at home and not feel guilty about it. I was able to relax and recharge to ultimately be a better caregiver. 

In addition to supporting me as a caregiver, The ALS Association greatly supported my husband. They gave him the tools and courage to fight, and he did every day. Our lives were filled with fun, love, and laughter before ALS, and we didn’t let ALS take that away. In September of 2020, Bob started to decline, and we were told he probably only had six months to live, if that. We embraced every minute. We started a weekly family dinner so our kids and grandkids could spend as much time with Bob as they could. We had many “last moments” that brought such love and joy to the very end. Bob fought hard for his family.  

With the equipment and resources, The Association took the emphasis off the outcome of the disease and focused on what we could do in the present. They kept our family motivated with the Pittsburgh Walk to Defeat ALS®, fundraisers, and inspiring events.  

Fundraising has given all our family and friends a chance to be a part of this fight to stop ALS. Everyone got involved and felt they were apart of Bob’s battle. We are the Go Getters for Bob Letters! 

Even though Bob’s battle is over, our family will forever be a part of the ALS community and help others in any way we can. It is my hope that no one will have to experience this brutal journey in the future. This is why I will always be an ALS Ally. 

Patty Letters, ALS Ally

By giving monthly I can ensure other caregivers are receiving the same tools that our family received to enjoy their lives together. Whether your loved one needs a wheelchair to go on a family vacation or you need assistance with in-home care, or you need a support group to vent or cry with, The ALS Association can help. The ALS Association looks at the care for the whole family, not just the person living with ALS.  

Please join me today, as an ALS Ally, to continue providing support to other families in need. My family and I are very fortunate to have had the time we had with Bob. Help us give tools and time back to other families.  

Give $25 or more/month and receive the same mug I am holding above.

#OurALSCommunity – A Network of Support

Recently, we asked the ALS community, “Why is it important to you to fundraise for our Chapter?,” and your response was incredible.

In reading your responses, we saw just how giving, compassionate, empathetic, determined, and willing to help #OurALSCommunity is.

We all fundraise for different reasons: to honor those currently battling ALS, in memory of those who have lost their battle, or simply to support the fight to end this devastating disease. Yet, we are all determined to do one thing: fight together to help find a cure so that another family doesn’t have to experience ALS.

Our Chapter provides support with resources and guidance, but the most valuable “resource” that we can give is the opportunity to connect families and rally our community to show that we are #ALSinThisTogether. This sense of unity gives us hope, drive, and direction as we fight to end this disease.

“I lost my wonderful, hard working, loving dad to ALS. I will keep fundraising and walking so that another child never has to experience the heart ache of losing their dad to this disease.”

– Cathlynn DAmbrosio

“Even after my dad’s passing we continue to be involved. We will always attend the walk and fundraise to help support the chapter.

After my dad was diagnosed the chapter helped us in so many ways. The help we received from the ALS clinic was amazing. In one visit we saw all the special area medical personal that we needed. The Association helped to get us adaptive silverware when needed as well.

The most important thing they gave my dad, my mom, and myself was love and support. They touched base with us on a regular basis with phone calls and messages. They offered classes to help us cope with what was happening and to heal our minds and hearts. They offered a wonderful, well needed, caregivers weekend away that let us make lifelong friends with other people who were part of the ALS family but made us realize that we are people and sometimes it’s ok to take care of ourselves. The Association became like an extended part of our family.

Even after my dad passed away, the Association continues to reach out to out to us. I don’t know what we would have done without the love, care, and support the Association has shown and given us. I will continue to always fight for a cure alongside them every day!” 

“I lost my favorite teacher to ALS. I had never heard of ALS before he was diagnosed – & I think bringing more awareness to the disease will be beneficial for so many reasons!”

– Ciara Walter

Rachel Tocco 

“My mother has been living with ALS since 2010 and the Western PA chapter has been a great source of support for our family. Not only with physical resources but emotional support as well. Supporting the Walk and fundraising is one way I can feel like I’m doing something to help. I live 300 miles away in Michigan and can’t be helpful to my mom on a daily basis so this makes me feel useful!”

Michelle Boring 

“I lost my mom to ALS in 2005 and have been the team captain for For the Love of Lee for the Johnstown walk since it started that same year. I usually send a letter or email to family and friends asking to participate and/or donate. One of the last things I tell them is that no amount of money can bring my mom back, but by raising money and awareness, hopefully one day there will be an end to ALS and prevent other families going through what mine did and watching my mom lose her battle to this horrible disease.”

“ALS took the life of the absolute most important.. influential.. heroic and angelic person in my life.. my mom!! And there is not a day.. an hour.. or a minute that I don’t miss or long for her. It has been 28 years and I cannot say the hurt .. or the headache gets any easier with time. Moms diagnosis was familia ALS, yet she never knew her birth family until after getting her diagnosis. Connecting with her birth family in a very odd, but definitely Gods plan .. his way! My family has walked in the Pittsburgh Chapter Walk every year.. since is inaugural year. I even pushed Mom in her wheelchair that first year. ALS is a horrid disease that needs so much attention and research! I.. along with my children and my family will walk.. donate and promote every ALS event until a cure is found.. or my last breath is taken!! #alssucks121692 ” – Lynn Glass Schwartzmiller

Melissa Lee DeMarco 

“I lost my father to ALS and I walk to being public awareness and to raise money for the future of the ALS community. And I participate in the chapter via social media and the walk to have a community of people who understand what you have gone through and to help those on their ALS journey.”

“Running the marathon and raising money in my father’s honor helped me to share my story, give him a voice as he was slowly losing his, and find meaning in tragedy. I grieved and healed my broken heart on those long training runs. And those runs were fueled by all the people who had given to the cause.”

– Christine Simonson

Blake Boring 

“The ALS Association has been so amazing to my mom and my whole family. Before her diagnosis I’ve never heard of this horrible disease. I love to fundraise because I know the money goes towards research and helping other families get through all the changes ALS comes with both physical and emotional. My mom has always been super independent and I know the fundraising goes towards tools/equipment to help her be as independent as she can! Also, I love to participate in the walk because it brings more awareness to people who don’t know exactly what ALS is.” 

“I lost my dad to this disease. After seeing what he went through, I never want to hear another person go through it again. Also, the chapter helped my parents with so many resources (physical and emotional) that more families need.”

– Amy Farrell

Alexis Freoni 

“It’s a way to come together as a community, help one another. No one is alone.”

Donna Owens 

“This devastating disease affects all family members…this is the reason we all come together to walk to raise awareness and raise money for a cure. Donna is my daughter and everyday I’m so inspired by her determination. We all share in this heart breaking devastation of her beautiful person….she does not give in and fights everyday to beat this dreadful disease.”

Debbie Maier Jacknin 

“I remember Larry coming home from the hospital. Up until a point he was doing pretty well but he took a turn and was struggling with breathing among other things. When he came home from the hospital he needed help (I think it was a shower chair). We called the  Chapter and they came that afternoon. While there, they explained to us that there are many services they provide and suggested they come back when we have time to sit down and talk. We did that and (to quote Casablanca) that was the beginning of a beautiful friendship. We could not have navigated ALS with their help. They were still there for me when he passed. It’s been almost 5 years and they still check in on me.” 

My family and I raise money in Steve’s memory, so his battle is never forgotten. In doing so, we help raise awareness about ALS, we help others in our community living with ALS, we walk for those who no longer can and one day, hearing the words of an ALS diagnosis won’t be a death sentence because there will be a cure! 

– Natalie Laskey

“My involvement with the chapter came from my husband’s battle with ALS. He was diagnosed in May 2018, but it wasn’t until late September, early October 2018 that we were introduced to the chapter and what it can do to help him. (He was in hospice at this time, and through the hospice service we were introduced to the chapter) Through the chapter, we received a grant, which was used to pay for the home health aids so that I could go to work. We also received a wheelchair from the loan closet. 

He lost his fight in November of 2018. The following year, I decided we would do the walk in his memory so I started Team Red Rooster, with a goal of raising $5000. In my mind, that money would give another family living with ALS a grant to use for what they needed. When picking up t-shirts at the chapter for the 2019 walk, I mentioned that I was technically a CEO and we briefly discussed the CEO Soak. When we found out my husband was terminally ill, we did our estate planning and in that, he transferred his business to me, making me the new business owner and technical CEO. In 2020, I did the CEO Soak in memory of my husband and to honor him for the business he entrusted to me. 

We love our local ALS chapter! 

The chapter has helped me get out of my comfort zone and reach out to people in a way I normally wouldn’t do in order to fundraise and bring awareness. And you all got me to stand in a fountain and get soaked.”

Jeannine Schoenecker 

“Words can never describe the range of emotions I felt when my husband Brett was diagnosed with ALS. Throughout our journey the one focal point was the ALS Association of Western PA. They have provided support, resources, education and they have made our cause their cause . They also provided some predictability to this very unpredictable disease. We were offered the opportunity to advocate on behalf of the Association and that was one of the best things that happened to us. It provided us a platform to advocate so that no one else will have to experience our journey. That is also why we fundraise. We could not go through this journey without the support of the ALS Association of Western PA. Helping to raise funds is our way of giving back to the Association.” 

“We need a cure! we’ve watched my uncle & my mother pass from familial ALS. it takes such a toll on the whole family. we can’t bare to watch another family member suffer. I want to release my fears of bringing a child into this world.. wondering whether or not I will have it or I’ll pass the gene to them. it’s terrifying & sad!” – Carli Gilchrist

Jessica Kozak

“When my mom had ALS the chapter did so much for us. When she passed away I felt like I needed to raise whatever I could so that the chapter could continue helping other patients/families. The more money that is raised the more they can do. Money for research is also important to me because I want to see the day when no one else ever has to deal with such a terrible disease. All money raised or items donated from our team is in memory of my mom and I know she’d be very proud of that.” 

Don Sharon Squillario 

“When you live in a small town and you have no local answers for a person that you know has something wrong, you know you have to go to a larger city to find some answers. That’s what we did with my Mom. When we came to Pittsburgh and she was diagnosed with ALS, the ALS Western PA Chapter allowed us not to have to want for a thing to help Mom. They were there from day one — and they were there 18 months later when Mom lost her battle. That’s why I do what I do — to say thank you to the Chapter for what they did for Mom. I will continue to help raise funds to assist families battling this monster and to find a cure so no one has fight this battle. I will fight for those who can’t!! 

I think the biggest thing is that everyone gathering at the different events are there for one thing—to find a cure. So many have been through a true battle with our PALS that have passed, which allows us to be a help to those who are currently going through the battle – even if it’s as minor as a hug or offering to help in any way we can.”

If you want to join this incredibly strong community and do more in the fight against ALS, consider the following:

Patty Letters and Lindsay Litterini Share How Chapter Support Groups Help Families Cope

Caregiver Support Group

What is the Caregiver Support Group?

The caregiver support group is available to provide encouragement and comfort to those who are caring for someone living with ALS. Please join us for an opportunity to share your feelings, develop relationships, receive emotional support, and discuss common caregiving issues with other caregivers. 

This support group is open to all current caregivers.

I am thankful for The ALS Association’s support groups. It is so nice to be able to talk to people that understand our journey. Unless you lived it, you don’t fully understand the stress, heartbreak, and cruelty of this disease. I have formed so many friendships and now have a strong network to rely on when I need the support.

Patty Letters

To register/ learn more about the Caregiver Support Group, please contact Sandra Thompson at 412.821.3254 or sandra@cure4als.org.

What is Powerful Tools for Caregivers?

Powerful Tools for Caregivers is a 6-week comprehensive course that helps caregivers take better care of themselves while caring for a friend or relative with ALS. In six classes, held once a week, you’ll learn self-care tools to reduce stress, improve self-confidence, better communicate your emotions, make tough decisions, manage time, set goals, solve problems, and locate helpful resources. 

When you’re caring for a loved one with ALS, you will want to do anything and everything to make their lives better, and to take care of them.

Lindsay Litterini, ALS Caregiver

By taking care of your own health and well-being, you become a better caregiver to those you love. Whether you provide care for a spouse, partner, parent, child, or friend; at home or in a care facility; whether you are down the block or miles away, our Chapter strongly encourages you to take advantage of our free 6-week Powerful Tools For Caregivers course starting Saturday, April 3rd – Saturday, May 8th.

To register/ learn more about the next Powerful Tools for Caregivers Class, please contact Sandra Thompson at 412.821.3254 or sandra@cure4als.org.

Our Chapter offers a full range of services to guide and assist those living with ALS and their families. The pages within the Patient & Family Services section of our website offer a wide range of information for patients, caregivers, family members, friends, and healthcare workers. To register with our Chapter for services, support, and to ensure you receive updates on our educational programs, please call 412-821-3254 or 1-800-967-9296, or click here fill out the Chapter registration survey online.

Chip Carton Shares His Experience with the CDC ALS Registry

The National ALS Registry and Biorepository is the single largest ALS research project ever created and designed to identify ALS cases throughout the entire United States. Created in 2009, the Registry collects critical information about the disease that will improve care for people with ALS and help researchers learn what causes the disease, how it can be treated and prevented. 

From my point of view, there really is no downside to joining the CDC ALS Registry. However, there are many many good reasons to join. One of those reasons being to contribute to research that will help all people living with ALS, now and in the future.

Chip Carton, Person Living with ALS

Chip Carton joined the ALS registry several years ago, after Chapter Director of Care Services, Marie Folino, MSW, LSW had mentioned it to him.

I joined the ALS registry, as soon as I heard Marie tell me about it several years ago. It is a great road to travel to find information and they share all information and studies with The ALS Association National office.

Since then, Chip has donated blood, participated in a drug trial, and completed countless surveys through the registry to continue to further ALS research at the national and international level. In addition, he even starred in the CDC’s “Why I Enrolled” video below.

When asked why he joined the Registry, Chip said

The ALS Registry is a great road to travel to find information…and they share all information and study data with The ALS Association National Office. I hope that doing this helps us in our battle to defeat ALS and provides a better future for people with this horrible disease.

How to Join the National ALS Registry

STEP ONE:

Click the “Join ALS Registry/Create Account” link located on the center of the Nationals ALS Registry homepage.

STEP TWO:

Click the “Join ALS Registry/Create Account” button located at the bottom of the ALS Patient Account Box.

STEP THREE:

Read the Account Notification Consent Form. If you agree, click the “I Agree” button located at the bottom of the Account Notification box.

STEP FOUR:

Answer ALS patient validation questions. Click the “Next” button to proceed to the next question. Answering these questions verifies your eligibility to participate in the registry.

STEP FIVE:

Read the National ALS Registry Consent Form. Clicking on the “I Agree” button means that you consent to participating in the registry. Note: You can withdraw from the registry at any time.

STEP SIX:

Fill in all of the required fields located on the ALS Patient Account Page. All required field are marked with a red asterisk (*). Remember your user name and password. You will need these to log into the registry to retrieve or update information. Click the “Submit” button located at the bottom of the ALS Patient Account box. When you have successfully joined the registry, you will see a green box that says “Registration Completed….”

STEP SEVEN:

Click the “Return to Login” link located at the bottom of the “Registration Completed” box. This will take you to the registry login page where you can sign in.

How to take an Available Survey on the National ALS Registry

STEP ONE:

Click the “Available Surveys” link located at the top of the Surveys box on the ALS Patient Account Page.

STEP TWO:

To view instructions for the Surveys, click the “General Instructions” link located above the Survey box on the ALS Surveys homepage.

STEP THREE:

To take a Survey, click a Survey Number or Survey Name located in the Survey column on the Surveys homepage.

Should you need help registering, please call the CDC at 877-442-9719 Monday-Friday between 9 a.m.-6 p.m. ET. You can also call the Chapter for more assistance at 412-821-3254.

Mary Johnson’s SSDI Journey and the Power of #ALSAdvocacy

Meet Mary

For those who may not know her, let us introduce, Mary Johnson.

Mary’s family makes up part of the 5-10% of those in #OurALSCommunity who experience the devastating effects of familial ALS. To date, she has lost over a dozen members of her immediate family, with some living only a few months after diagnosis.

Having seen the effects of ALS on her family for years, Mary Johnson officially became an ALS Advocate in 2007, the year her sister was diagnosed.

Since then, she has committed her life to making a difference for #OurALSCommunity. Every year, Mary travels to Washington D.C., pictures of loved ones lost in hand, to make an emotional impact on elected officials and implore them to take action in enacting laws that have shaped the future of ALS legislation.

“As an ALS Advocate, I feel that my loved ones have not suffered in vain, and that we are going to end this terrible disease and all of the pain that comes with it for future families affected by ALS.”

Recently, Mary found out that she is the only person in her family who does not have the mutated gene associated with the familial form of ALS. As a result, she has vowed to continue to use her voice to advocate on behalf of the loved ones she has lost.

Fighting to Eliminate the SSDI 5-Month Waiting Period

Having experienced ALS many times, Mary was all too familiar with the 5-month waiting period placed on individuals with ALS to receive SSDI benefits/Medicare.

She knew firsthand that families living with ALS did not have 5 months to wait to receive benefits. At the age of 25, Mary’s niece was diagnosed with the bulbar onset form of ALS, and unfortunately lost her battle one month before becoming eligible to receive SSDI benefits. This left her family with thousands of dollars in unpaid bills to reconcile.

Knowing how limiting the waiting period for SSDI benefits could be with a disease like ALS, Mary knew that her story had to be heard. Although she had been advocating for those with ALS for years, it was in 2018, when Mary attended the national ALS Advocacy Conference, that she was personally asked to share her story with the Associate Commissioner of the Office of Disability Policy for Social Security, Gina Clemons.

A few weeks later, she wrote a letter, addressed to Ms. Clemons, in which she attached the photos of her loved and outlined the devastating effects of the disease on her family. When asked why she decided to include personal photos, Mary responded,

This disease is so random, and the age range of those diagnosed is so widespread, that it can be hard for others to understand the impact that this disease has.

Every year since, Mary has lent her voice and her story to countless elected officials, appealing for the elimination of the 5 month waiting period for Social Security Disability Insurance (SSDI) benefits for those living with ALS with pictures of her loved ones in hand as she marches up the steps of our Nation’s Capitol.

And her tireless advocacy efforts have paid off. On December 22, 2020, President Trump signed the ALS Disability Insurance Access Act of 2019, into law, eliminating the five month waiting period for those living with ALS to receive SSDI Benefits.

When asked how she felt after hearing the news, Mary said,

I finally felt like I could breathe, knowing that no one else would have to go through what we went through. It felt like all that work had paid off.

“The cure for ALS and other motor neuron diseases is on the horizon, but progress only comes when enough people are willing to advocate for change. We need YOU.”

Mary Johnson

A Letter from Brett Schoenecker on the NEW Living with ALS Support Group

“My name is Brett and I am living with ALS.  My wife, Jeannine also lives with ALS, as my caregiver.  I was diagnosed in October of 2018.  As all patients and caregivers know, we were quickly forced to jump on the ALS rollercoaster, while it was moving. 

There was: research about the disease, discovering what services/support that we might need and where to find providers, the bewildering and bureaucratic application process to get on Medicare and Disability, and a thousand other things.

We accepted these challenges and with the help of the AMAZING folks at the ALSA Western PA Chapter (ALSAWPA), over the past 2 years, we have become better informed/educated about what it takes to live our best lives through our ALS journey.

This past summer, we were contacted by Marie, Director of Care Services, to gauge our interest for participation in support groups of patients and caregivers.  My initial feeling is that neither myself nor Jeannine needed a support group as we have a pretty good handle on living with this disease.  But as I thought about it more, Marie and the rest of the team have never steered us wrong, so I decided to give it a shot.  I was pleasantly surprised.

The support group is conducted by Meghan in a very relaxed, caring, and interactive format.  We have had both men and women participate.  Some folks just come online and listen.  Some folks tell the story of their diagnosis and we even have some participants who are nonverbal, but add their comments by typing in the “chat” feature. We discuss challenges we face with our own personal journey and often we compare our strategies for dealing with them. Topics range from: comparing medications/treatments, the use of supplements/medical marijuana, what assistive devices work/don’t work for an individual, and many others.

From my own perspective, I have a need to help people and the group fulfills that need.  Even though I am no longer able to physically provide assistance, I can share my knowledge with those who have just joined the rollercoaster.  And occasionally a PAL (person with ALS) just needs to talk with someone who lives the shared challenges.  An added bonus to group participation is that it is a chance to interact with a group.  Covid-19 has isolated us all and this is one tool to share your thoughts and feelings with PEOPLE.

The group only meets one hour per month and there is absolutely NO stress involved.  I would highly recommend joining us, if only to test the waters.  Hopefully you will be as pleasantly surprised as I have been.

Every Day is a Good Day.”

-Brett

The Living with ALS group is a monthly meeting for those currently diagnosed with ALS. It’s an opportunity to meet, encourage and learn from each other. For more information, contact Marie Folino, MSW, LSW at 412.821.3254 or marie@cure4als.org.

#HeartofWhatWeDo – Research 101

Current Research

The ALS Association is the largest private funder of ALS Research worldwide, and those efforts have led to some of the most promising and significant advances in ALS research.

The ALS Association tackles ALS through supporting scientific studies in the following 13 focus areas:

  • Assistive Technology
  • Biomarkers
  • Clinical Studies
  • Cognitive Studies
  • Disease Mechanisms
  • Disease Models
  • Drug Development
  • Environmental Factors
  • Genetics
  • Nanotechnology
  • Natural History Studies
  • Precision Medicine
  • Stem Cells

ALS Focus Surveys

ALS Focus is a patient- and caregiver-led survey program that asks people with ALS and current and past caregivers about their needs and burdens. The goal is to learn as much as possible about individual experiences throughout the disease journey so that the whole ALS community can benefit.

All data collected is de-identified and shared free of charge with the entire ALS community.

Results from ALS Focus surveys are planned to be published in peer reviewed journals and other channels. All data collected is openly available and free to the entire ALS community. Survey participants will have early access to the results.

Clinical Trials

Clinical research is the only way that promising laboratory science can be translated into treatments and cures for ALS and other neurological diseases. People with ALS, along with family members and caregivers, are essential partners in this research.

The ALS Association partners with the Northeast ALS Consortium (NEALS) to provide the most accurate and up-to-date resource for information on both federally and privately funded clinical studies focusing on ALS and other similar motor neuron diseases.

NEALS was founded in 1995 with 9 academic clinical centers in the New England area. With help from The ALS Association’s TREAT ALS Network, Muscular Dystrophy Association, and our generous donors, the NEALS membership has grown to over 100 research centers committed to performing research in ALS and MND.

Jill Yersak, PhD Talks Updates in the ALS Research Landscape

For the latest ALS Research news & updates, visit: