News & Stories

June 2024 ALS Newsletter


2024 Lou Gehrig Day Marks 40 Years of Phillies Effort to #StrikeOutALS

Thank you to the Philadelphia Phillies, their fans, and Asplundh for an amazing ALS Awareness Night Presented by Asplundh. Thanks to their incredible efforts, over $750,000 was raised to #StrikeOutALS.

ALS United Mid-Atlantic Advocates Make an Impact

On Wednesday, June 5, Pennsylvania State Representative Kyle Mullins (center) joined ALS, Alzheimer’s Diseases, and Parkinson’s Disease advocates to introduce a proposal for a Neurodegenerative Disease Research Initiative.

This spring, our incredible ALS advocates demonstrated the power of their stories through state and federal advocacy.

On June 5th, our advocates joined Pennsylvania State Representative Kyle Mullins as he introduced legislation to promote research into neurodegenerative diseases like ALS, Parkinson’s Disease, and Alzheimer’s Disease. In May, ALS United Mid-Atlantic members joined the I AM ALS conference in Washington, DC, which included the Cures Collective to share ideas on how to collaborate on future research projects. ALS advocate Craig Colby was recognized by the Delaware legislature as he joined Hearts for Home Care in the Delaware State Capitol to promote access to home care. Stephen Cronin visited the ALS United Mid-Atlantic office to visit with Pennsylvania State Senator Maria Collett and State Representative Melissa Cerrato to discuss ALS care and research.

Your stories make a difference! ALS United Mid-Atlantic advocates continue to make a significant impact on advancing public policy to support ALS care and research. Email to learn how you can advocate today.

ALS advocates Craig Colby and Adam Czerwinski (left) met with Delaware State Senator Sarah McBride to discuss the importance of accessible home care.

On Wednesday, June 5th, Governor Josh Shapiro signed the Paul Miller Law to stop distracted driving in Pennsylvania. This bipartisan law, championed by State Senator Rosemary Brown, is the result of over a decade of advocacy from Paul and Eileen Miller, who lost their son to a distracted driver. Paul and Eileen are tireless advocates for protecting people from distracted driving, educating young drivers, and for the ALS cause. ALS United Mid-Atlantic extends our congratulations to Eileen and Paul for their unwavering dedication to pass this legislation.

A United Approach to ALS Research

Videos from Help and Hope

Dr. Mary Sedarous spoke about advances in ALS research at the Help and Hope Symposium in April.

The 2024 Help and Hope Symposium brought together leading experts to discuss topics that are important to the ALS community, from mental health to advances in technology to genetic therapies.

Videos from the event are now available on our ALS United Mid-Atlantic YouTube channel. We encourage you to watch and share them to educate your friends and families about the latest progress in ALS care and research.

Upcoming Events

ALS United Walk


Experience the NEW ALS United Walk! Gather with your friends, family, and neighbors as we walk United to End ALS. The Hershey ALS United Walk is this Saturday, June 8, and we will host four Walks this fall in Rehoboth, Ocean City, Lehigh Valley, and Philadelphia.


Register today and walk United to End ALS. To learn more, visit

ALS United Ride


Celebrate 25 years at Morey’s Piers in Wildwood, New Jersey! Join us on Saturday, June 15, as we celebrate this wonderful milestone. The Jersey Shore ALS United Ride is designed for cyclists of all ages and riding abilities, with routes ranging from 6 miles to a Metric Century (100 KM).

Learn more about how you can get involved by visiting

Longwood Gardens Day Brings Smiles to ALS Families

The family of Jim and Jane Shields enjoyed a fun and relaxing day at Longwood Gardens.

Thank you to all the families who joined us for our Luncheon at Longwood Gardens on Saturday, May 18. It was a wonderful day, as families enjoyed the beautiful scenery and flowers in full bloom. ALS United Mid-Atlantic hosts several ALS Family Events throughout the year, free of charge, so that our ALS families can create lasting memories. Thank you to all our volunteers who make these events possible.

“You Were There” Concert with Jimmy Charles Benefits ALS Cause

Don’t miss the “You Were There” concert featuring the Jimmy Charles Band as they perform on Sunday, June 9, 2024, from 4-8 PM at Venue 54 (formerly Southern Belle) in Delmar, MD. Jimmy Charles and his band are honoring caregivers and their dedication.

Jimmy Charles has been a strong advocate for ALS; he has performed multiple fundraising events on the peninsula and in Hershey, PA. Jimmy witnessed the effects of ALS on his high-school weightlifting coach and his first drummer when he moved to Nashville.

Save the Date for the Roger Kirk ALS Golf Outing

We are thrilled to announce the Roger Kirk ALS United Golf Outing Hosted by Greg Gross is returning to Old York Road Country Club on Monday, October 7. Registration includes your choice of a morning or afternoon round, cocktail hour, and dinner. Spots fill up fast for this annual golf outing, so don’t delay! Visit for more information.

Community Highlights

Introducing Our Newest Board Member:
Robert Doren

Robert Doren has a long history supporting the ALS mission and recently joined the
board of ALS United Mid-Atlantic.

ALS United Mid-Atlantic is thrilled to welcome Robert Doren as the newest member of its Board of Directors. Robert brings personal and professional experience to the ALS United Mid-Atlantic mission and he is ready to help move the organization forward to advance excellence in ALS care and research.

Robert first became involved with the ALS cause in the Buffalo, NY, region when his wife Teri was diagnosed with ALS in 2006. During his wife’s 11-year battle with ALS, Robert was her advocate and caregiver. His steadfast commitment to the ALS United mission is a testament to his love for Teri and his understanding of the impact that ALS has on a family.

Planned Giving Leaves a Lasting Legacy

When you donate to ALS United Mid-Atlantic, you create a lasting legacy in the fight against ALS.

Did you know that you can provide long-lasting benefits for your family, loved ones, and the causes you care about most, like supporting the ALS community, through your will? For more information, please contact Donna Cleary, Director of Development, at 215-664-4133 or

Recognizing 25 Years of Service – Gifts are worth DOUBLE

The Marjorie Shimer Durable Medical Equipment Program is marking its 25th year of providing critical equipment to people with ALS.

In honor of this landmark anniversary, John and Loretta Russo have partnered with the Development Committee of the ALS United Mid-Atlantic Board of Directors to MATCH donations to the Shimer Equipment Program, up to $25,000!

Proper equipment is crucial to the well-being and independence of people living with ALS, but most people cannot afford to purchase or rent equipment when their symptoms change. The Shimer Equipment Program serves people with ALS with what they need when they need it.

Marc and Lori Schefsky (center) participated in ALS Advocacy in Washington, DC, this April.

Volunteers of the Month: Marc and Lori Schefsky

Marc Schefsky was an active community member and volunteer before he was diagnosed with ALS in late 2021. Over the past two and a half years, Marc and his wife Lori have given their time and energy to support the ALS United Mid-Atlantic mission in every way they can. From bringing awareness to the disease to advocating in Washington, DC, to fundraising and speaking at events, Marc and Lori are true ALS champions.

Share This Page: