News & Stories

July 2024 Newsletter

2024 Annual Celebration Honors the Philadelphia Phillies

Thanks to the Phillies’ unwavering support, ALS United Mid-Atlantic has worked tirelessly to ensure that every person affected by ALS can access the support they need as we unite to find new treatments and a cure for ALS. Join us on Friday, November 15th, as we honor the Philadelphia Phillies for their 40 year commitment to Strike Out ALS. Follow for details.

Spark of Hope Stories

Ed and Andy: Fathers with ALS who Continue to Inspire

This Father’s Day, ALS United Mid-Atlantic highlighted the inspirational stories of two fathers living with ALS. Ed Mytych (above center) just completed the Hershey ALS United Walk with his family. He shared his story about the many travels he has had with his sons around the world and how his children support and motivate him to live the best life possible.

In our second Father’s Day story, Andy Johnson shared photos and video about his trip from Pennsylvania to Texas to walk his daughter Megan down the aisle for her wedding. Andy credits his ALS United Mid-Atlantic nurses, the team at Penn State Health Hershey Medical Center, and assistance from NuMotion for making his travel possible. In addition to being by his daughter’s side, Andy was able to sing for her and her new husband in a moment they will always treasure.

ALS United Mid-Atlantic Advocates Make an Impact

On Wednesday, June 5, Zachary Simmons, MD, represented Penn State Health and ALS United Mid-Atlantic as he joined ALS, Alzheimer’s disease, and Parkinson’s disease advocates to introduce a bipartisan proposal for a Neurodegenerative Disease Research Initiative.

Last month, ALS United Mid-Atlantic advocates joined a bipartisan group led by Pennsylvania State Representative Kyle Mullins to introduce legislation to promote research into neurodegenerative diseases like ALS, Parkinson’s disease, and Alzheimer’s disease. This proposal continues to gain momentum in the state legislature because of the power of your advocacy.

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.

A United Approach to ALS Research

Videos from Help and Hope

Dr. Colin Quinn spoke about recently approved ALS treatments during 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

Thank you to everyone who joined us for ALS United Walks in Scranton, Seaside, and Hershey this spring! Together, we marched to support vital care service programs and fund cutting-edge research. Every team captain, fundraiser, donor, sponsor, and volunteer made a difference.

This fall, we will have four ALS United Walks throughout Delaware, New Jersey, and Pennsylvania. To learn more, visit

ALS United Ride

The 2024 Jersey Shore ALS United Ride was a fantastic event that brought together riders of all ages to support the ALS mission. As a thank you for the wonderful effort this June, our staff is extending the fundraising deadline for incentives to July 15!

Donate to Ride teams now at:

Lenny’s Light Golf Outing Raises Money for ALS Families

On Friday, June 21, Lenny Rafalko was joined by friends, family, and neighbors for his second annual Lenny’s Light Golf Outing. The event raised over $20,000 for the ALS cause, including support for ALS United Mid-Atlantic, The ALS Treatment Center at Lehigh Valley Health Network, and assistance for local ALS families. Even with the high temperatures, golfers eagerly signed up to show their love for Lenny and make a difference for those living with ALS.

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

Welcome to the Board: Crystal Goodwyn

Crystal Goodwyn joins the board with decades of professional experience in healthcare and a personal connection to ALS through her brother Kevin Glenn.

ALS United Mid-Atlantic is honored to welcome Crystal Goodwyn to the Board of Directors. Crystal has extensive professional experience in the biomedical research industry and a deep personal understanding of ALS as the sister of Kevin Glenn, who lived with ALS for over 22 years. Now Crystal is using that experience to benefit our ALS mission.

Harness the Power of Giving

When you donate to ALS United Mid-Atlantic, you make an immediate impact for those living with ALS.

Harness the power of your spare change to support ALS United Mid-Atlantic’s mission! For more information, please contact Cecilia Loos at or 215-987-6988.

Christie Cozzie-Nester is a dedicated caregiver, advocate, and volunteer for the ALS cause.

Volunteer of the Month: Christie Cozzie-Nester

Volunteering can be powerful, especially when you are working to lift up others. As a caregiver, organizer, and advocate, Christie Cozzie-Nester is committed to making a difference for those impacted by ALS while showing others just how powerful they can be too.

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