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A Message for ALS Awareness Month

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A Message from the Executive Director

Dear Friend,

As ALS Awareness Month concludes, I want to share this personal note with you about the mission of ALS United Mid-Atlantic and the progress we are making in the fight against ALS with your help.

As I shared with you in September, we joined 14 other Chapters in separating from The ALS Association in order to maintain our independence. Click here to read my letter from last year with the details. While our name has changed, our mission and commitment to those impacted by ALS remains unchanged and includes the same priorities we have focused on for over 40 years.

  • Progress in ALS Care: Our exceptional care professionals, physicians, and volunteers provide services to over 1,200 people with ALS each year, including:
    • 1,440 patient visits through our 8 ALS Multidisciplinary Treatment Centers.
    • 124 resource groups offered for patients, family members, and caregivers.
    • 259 pieces of equipment such as power wheelchairs and shower chairs.
    • 25,547 hours of in-home care services.
    • Resource groups, webinars, and trainings to assist caregivers.

  • Advancing ALS Research: We are committed to investing in the future of ALS research through our growing ALS United network, and locally through nationally recognized ALS research centers. These efforts are producing real results, including the FDA approval of tofersen (Qalsody) in 2023, the first approved genetic therapy for ALS.

    Watch videos from last month’s Help and Hope Symposium to learn more about this progress.

  • Success through ALS Advocacy:  ALS United Mid-Atlantic is a national leader in ALS advocacy. In April, our advocates visited Washington, D.C. to urge Congress to pass priorities like the ALS Better Care Act, and we have been active in state capitals as well with over $3 million in funding for ALS care across Pennsylvania, New Jersey, and Delaware in 2023. Your inspiring stories make this success possible. 

Members of our amazing care staff joined our Help and Hope event.

At ALS United Mid-Atlantic, we are truly UNITED by our mission. We know our patients and families on a personal level. You see us at visits to an ALS Treatment Center, at local events, and during home visits. When you connect with ALS United Mid-Atlantic, you do not interact with a faceless AI program or automated phone system. You connect with some of the most experienced, compassionate care professionals in the nation. Collectively, the members of our care services team have been with us for more than 150 years, and have an astounding 3 ½ centuries experience working in their professions.

As Executive Director of ALS United Mid-Atlantic, I am incredibly proud of our staff, board members, and volunteers who unite to make our mission achievements possible. Everything we do is in service of families impacted by ALS. That is our promise.

Our ALS advocates were joined by State Representatives Kyle Mullins and Bryan Cutler to mark May as ALS Awareness Month in Pennsylvania.

The Philadelphia Phillies will celebrate ALS Awareness Night presented by Asplundh on Sunday, June 2nd, as they take on the St. Louis Cardinals at Citizens Bank Park. Since 1984, the Philadelphia Phillies have partnered with ALS United Mid-Atlantic to Strike Out ALS. Please order tickets at this link to ensure that your purchase will benefit our ALS mission: https://www.mlb.com/phillies/tickets/specials/als-awareness

Please note: Accessible seating was in high demand and may be sold out for this game.
Thank you for all that you do to support the mission of ALS United Mid-Atlantic. Since 1977, we have expanded our programs to meet the needs of those living with ALS while investing in treatments to end this disease forever. Whether you donate, volunteer, advocate, or attend one of our many events, we could not and cannot do this without you.
Sincerely,

Jeffrey W. Cline
Executive Director
ALS United Mid-Atlantic

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