#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.

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:

#HeartofWhatWeDo – Care Services 101

Care Services plays a key role in the Heart of What We Do. The ALS Association Western Pennsylvania Chapter offers a full range of services and support to guide you through living with ALS. The Chapter Care Services team is here to provide information and education for those living with ALS, caregivers, family and friends, and healthcare workers.

Equipment Program

  • The Chapter offers a program to assist those living with ALS to obtain much needed medical equipment and assistive technology.
  • In partnership with several medical equipment suppliers and facilities, the Chapter is able to provide equipment free of charge for those living with ALS.
  • The Equipment Program offers a wide range of adaptive equipment to help with daily care to power wheelchairs and speech generating devices.
  • The Equipment Program is one of the most utilized resources available at the Chapter. With hundreds of items offered, the program provides solutions and support in the areas of mobility, speech, fine motor skills, personal hygiene, and everyday tasks.

Grants

The Chapter offers a grant assistance program for home modifications, speech generating devices, power wheelchairs, or respite/home care that meets the needs of those living with ALS.

This program is subject to the availability of funds and includes assistance for the following:

Home Modifications: A one-time only grant that provides full or partial payment of such items as stair glides, ramps, or bathroom modifications.

Speech Generating Devices/Power Wheelchairs: This one-time grant is meant to supplement insurance coverage towards the purchase of a speech generating device or a power wheelchair.

Respite/Home Care Program: This program provides periodic short-term relief to those living with ALS to help a primary caregiver have a break from full time care responsibilities, to help when there is no caregiver available to assist with care or while waiting for state funded programs to start.

ALS Multidisciplinary Clinics

The ALS Association collaborates with some of the best ALS physicians and clinics across the United States to help ensure that people living with ALS have access to specialized care, based on best practices. Certified Treatment Centers of Excellence and Recognized Treatment Centers provide compassionate care in a supportive, family-oriented atmosphere.

This multidisciplinary care model brings together a team of health care professionals specially trained to address the needs of people living with ALS, allowing them to receive care from each discipline during a single visit.

The care team typically includes a neurologist, physical therapist, occupational therapist, respiratory therapist, nurse, dietitian, speech language pathologist, social worker, mental health professional and an ALS Association Chapter liaison.

Support/Resource Groups

Powerful Tools for Caregivers Class

A national program designed for caregivers offered several times throughout the year. The 6 weekly classes provide information to caregivers to develop a wealth of selfcare tools. Class participants also receive a copy of “The Caregiver Helpbook”, developed specifically for the class.

Care Connection

The Care Connection program provides a plan for organizing help, training and information about what approaches tend to be most effective. The Care Connection uses a website – lotsahelpinghands.com – that allows volunteers to sign in and see the community calendar where tasks have been posted by a volunteer coordinator.

Caregiver Support Group

The Caregiver Support Group is available to provide encouragement and comfort to those who are caring for someone living with ALS. The group is 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.

Living with ALS Group

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.

Resource Group

Resource group meetings are a time for people living with ALS, caregiver, family members, and friends to learn and share about topics specific to ALS. Individuals can participate virtually via computer or phone.

Educational Materials

  • “ALS Bulletin…Keeping you Posted”:

A monthly e-newsletter sent to those living with ALS, their family, and caregivers providing information about ALS, upcoming Chapter events, and webinars.

  • Resource Groups:

Resource group meetings are a time for patients, caregivers, family members, and friends to learn, ask, share and grow throughout their ALS experience. Individuals can participate virtually via computer or phone.

  • Educational Symposia:

The Chapter’s symposiums are excellent learning opportunities and cover a variety of subjects from patient care, research, and advocacy, to new approaches to assistive technology and caregiving. Several educational symposia are held throughout the year and at various locations in our service area.

To register with the Chapter for services, support, and to ensure you receive updates on educational programs, please call 412-821-3254 to speak with Director of Care Services, Marie Folino, MSW.

#HeartofWhatWeDo – Advocacy 101

Federal ALS Advocacy

The ALS Association is at the forefront of public policy working to improve the lives of people living with ALS and their caregivers. Federal advocacy work focuses on educating and mobilizing all members of Congress in a nonpartisan fashion to achieve the mission of The ALS Association: to discover treatments and a cure for ALS, and to serve, advocate for, and empower people affected by ALS to live their lives to the fullest.  

Through the active participation of people with ALS and the broader community, we have made significant accomplishments together.

  • Eliminating the 5-month waiting period for people with ALS to access their Social Security Disability benefits. Previously, we eliminated the 2 year waiting period.
  • Increasing federal funding from $10 to $20 million at the Department of Defense ALS Research Program and from $83 to $111 million at the National Institutes of Health between fiscal years 2018 to 2020 for research to find treatments and a cure for ALS.
  • Leading efforts to create and securing funding for the National ALS Registry and Biorepository, a Centers for Disease Control and Prevention database of people with ALS and biological samples that helps scientists understand the disease and its causes.
  • Implementing historic regulations at the Department of Veterans Affairs designating ALS as a service-connected disease, ensuring that veterans with ALS and their survivors have access to VA benefits, including health care and disability benefits.

National ALS Advocacy Conference

Every June, individuals from across the country come together at the National ALS Advocacy Conference to bring the cause to elected officials in Washington, D.C. Through this work major strides have been made to keep ALS a priority for the federal government.

Due to Covid-19, the conference and subsequent meetings with members of Congress were held virtually for the first time ever in 2020 and will be held virtually again in 2021.

2021 Research Policy Priorities

$130M+ to fund ALS research at National Institutes of Health (NIH) to attract the next generation of neuroscientists, accelerate discovery and development of new treatments and increase the number of ALS clinical trials.

$60M for the Department of Defense ALS Research Program (DOD ALSRP) to fund clinical trials to pull through promising preclinical research and human studies into ALS drug development.

$50M for the Orphan Products Grants Program at the U.S. Food and Drug Administration (FDA) to fund research to expedite product development, foster innovative trial designs, and enabling natural history studies to better understand the disease progression and pathology.

$10M to fund research at the National ALS Registry and Biorepository at the Centers for Disease Control and Prevention (CDC) to help researchers identify candidates for clinical trials, identify risk factors for ALS, and collect biological samples that will aid the search for treatments and a cure.  

$1M to commission a National Academy of Sciences (NAS) study to develop a plan and policy recommendations for what can be done by the government and all stakeholders to end ALS.

Action Alert: Write to Your Members of Congress

Ask Your Members of Congress to Join the ALS Caucus

The bipartisan Senate and House ALS caucuses bring together members of Congress from both sides of the aisle to raise awareness about the challenges faced by people with ALS and their families, advance policies that improve the lives of people with ALS, expand the network of support for those suffering with the disease, and advocate for investments in research to discover a cure. Send a letter to your members of Congress and ask them to join the ALS Caucus today.

State & Local ALS Advocacy

State Advocacy Day of Action

Each spring, the Western Pennsylvania and Greater Philadelphia Chapters join forces to advocate in Harrisburg for state funding. In order to be included in the state budget as a healthcare line item, advocates meet with key Pennsylvania Representatives and Senators.

To make an impact, volunteers share personal ALS stories and highlight how the Chapters utilize state funding to help with the equipment loan program, respite care grants, and ALS multidisciplinary clinic funding. Additionally, the meetings act as an opportunity to provide Chapter information to ensure the local offices know services and education are available for those diagnosed with ALS in their districts.

Due to Covid-19, the State Advocacy Day of Action and subsequent meetings were held virtually for the first time ever in 2020, and will be held virtually again in 2021.

On May 12, 2021 we are asking you to take action by making phone calls, sending emails, and using social media to have our voices heard by state policymakers about issues that have a direct impact on the lives of people living with ALS and their families.

All are welcome to join the day of action. Keep an eye out as we provide more information on how to participate later this year.

The CDC ALS Registry & Biorepository

The National ALS Registry is a program to collect and analyze data about persons living with ALS. It includes data from existing national databases and information provided by persons with ALS who choose to take part. Researchers can use Registry data to look for disease pattern changes over time. They can also try to identify whether there are common risk factors among individuals with ALS.

Get Involved

Become an ALS Advocate

By becoming an ALS Advocate, you can help change laws and policies that affect our ALS community.

To learn more and become an ALS Advocate, contact Kelsey Schooley at kelsey@cure4als.org or 412-821-3254.

Sign up for ALS Action Alerts

Visit als.quorum.us/register to review federal advocacy issues, learn about your elected officials, and take action in support of the brave individuals living with this disease.

November is National Caregiver Appreciation Month

Each November, The ALS Association celebrates National Family Caregivers Month, and we pay tribute to the individuals who provide assistance to those living with ALS.

ALS caregivers do not ask for their role, but they embrace it courageously   out of love for a family member, spouse, or friend with the disease. Caregivers report high levels of stress and often say they struggle to ask for help out of fear of burdening others. They also have higher rates of negative health outcomes like heart attacks and report high levels of financial hardship. People with ALS are at high risk of respiratory failure, which means quarantining during the public health crisis is critical. This isolation can cause great depression and more work for the primary caregiver. It is important that we support our caregivers. 

The ALS Association is grateful to the thousands of people who take care of family members and loved ones with ALS. To support caregivers, The ALS Association offers helpful resources for caregivers. Resources include caregiving tips and hints, information on coping with the demands of caregiving, respite care, and more. To learn more, visit cure4als.org.

Top 5 Ways to Celebrate National Family Caregivers Month
1. Offer a few hours of respite time to a family caregiver so they spend time with friends, or simply relax.

2. Send a card of appreciation or a bouquet of flowers to brighten up a family caregiver’s day.

3. Encourage local businesses to offer a free service for family caregivers through the month of November.

4. Help a family caregiver decorate their home for the holidays or offer to address envelopes for their holiday cards.

5. Offer to prepare Thanksgiving dinner for a caregiving family in your community, so they can just relax and enjoy the holiday.

On November 12th we invite you to join us in recognizing our amazing caregivers during the ALS Community Cares Auction.

The funds raised during this virtual event will support programs like our respite care program that provides much needed relief to our caregivers. 

While we use technology to bridge the gap with services like virtual support groups and video calls, it is critical that we continue to innovate, to make sure that all people with ALS and their caregivers have access to the self-care and support they urgently need. 

You can learn more about the resources available for ALS caregivers here.

Submit your Caregiver Appreciation story/thank you today to be featured throughout the month of November!

FOLLOW US ON SOCIAL MEDIA THROUGHOUT THE MONTH FOR FEATURED STORIES, TIPS & MORE!

Special thanks to our Caregiver Appreciation Sponsor:

These Teams are bringing The Pittsburgh Walk to Defeat ALS® to their Neighborhoods!

The first ever Walk to Defeat ALS happened here in Pittsburgh in 1993 thanks to two dedicated volunteers, Rita Hirschfield and Bob Kelley. 20 years ago, The National ALS Association officially adopted the Walk to Defeat ALS program making it a signature event nationwide. What started locally spread across the country and grew in size and scope to over 170 events, and in 2019 raised over $26 million dollars.

Due to the COVID-19 pandemic, The ALS Association Western Pennsylvania Chapter’s 28th annual Pittsburgh Walk to Defeat ALS®, presented by the Mascaro Family Foundation will look a bit different than usual. However, the mission is still the same, to UNLOCK a cure for ALS!  Therefore, the Association has provided walkers with the tools to host their own mini Walk to Defeat ALS® from home. Registered teams will receive a Walk Kit full of supplies and a link to participate in the opening ceremonies, streamed live on the Chapter’s Facebook and YouTube at 10am on Saturday, September 12th. 

“The event was never about the way we walked, it’s about the important funds and awareness that comes from the event’, said Executive Director, Ryan Reczek. ‘That is why we couldn’t cancel. The ALS community is relying on this funding.” 

Meet three Pittsburgh Walk to Defeat ALS® teams that have embraced this year’s “Walk Where You Are” theme and planned their very own mini-walk celebrations!

Meet Captain’s Crew

Team Captain: Committee Members Laura Gidas and Randa Triggs

Because team “Captain’s Crew” members are spread out across Pennsylvania, Team Captains Randa Triggs and Laura Gidas got creative and have planned a Virtual Zoom Happy Hour on Sept 13th at 7pm in memory of Joe Triggs!

The theme of the event is based off of Joe’s love for sailing and team “Captain’s Crew” has embraced the mantra, “We can’t change the wind, but we can adjust our sails.”

As part of the Happy Hour event, Team “Captain’s Crew” will also host a trivia night for team members with questions about Joe, ALS, and Sports! To celebrate, winners will receive various prizes and gift cards!

Meet Ray’s Legacy

Team Captain: Hollee Russell

It’s been 30 years since Ray Brendlinger lost his battle with ALS & Team “Ray’s Legacy” have been walking for close to 27 years! This year, the team plans to have a picnic and walk at a pavilion built in honor of their “Pap.”

The team plans to host their very own mini – walk in Brush Valley PA at the Brush Valley Municipal Park.  On September 12th team members will enjoy a picnic, followed by a walk around the ¼ mile track at the park.  The park is not only special to team “Ray’s Legacy” because it is in their hometown, but because the pavilion where their picnic will be held was an Eagle Scout Project, completed by family member, Christopher Anderson in 1998, and dedicated in memory of Ray.

“Our family looks forward to this walk every year, it is always a wonderful day to just celebrate the life of a great man, and raise money for an amazing organization,” said team captain, Hollee Russell.

Comparison Story by Heather Shearer, dedicated to Ray Brendlinger

Meet Mom’s Marchers

Team Captain: Lynn Schwartzmiller

Lynn Schwartzmiller, team captain of “Mom’s Marchers,” has been walking in memory of her mom, Diane Marie Glass, since the first walk! But this year, this team is shaking things up with a Milk Shake Party! On Friday, September 11th you can find this team at 1448 Iriqouis Drive servin’ up some shakes! The team encourages everyone to stop by and come sit and chat, or enjoy your shake via COVID friendly curbside delivery💜

When asked why the Pittsburgh Walk to Defeat ALS® is important to their team, Lynn expressed, “Our family lives on through my mom, the lessons she taught and the examples she showed. There is not a day that she is not thought of, or a celebration that she is not part of! Our family has walked as ‘Mom’s Marchers’ every year in the Pittsburgh Walk to Defeat ALS; and we will walk for another twenty and another twenty until a CURE is FOUND!!! ‘We walk because we can… and she would if she could!’

In addition, the Chapter plans to go LIVE with team captain, Lynn at her event on Friday night! Tune in via Facebook

Pittsburgh Walk to Defeat ALS® committee and the  chapter thanks all teams who have made this year’s Pittsburgh Walk to Defeat ALS® a success, and encourages anyone in the community to donate and participate.

Thank you to our 2020 Walk Sponsors!