SAVE THE DATE:
Two Months Until the 2024 Annual Celebration Honoring 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 www.alsannualcelebration.org for details.
Spark of Hope
Illuminating ALS
Art is the gateway to the soul. Eric Brunner is an accomplished artist who was inspired by his personal journey living with ALS to create a project called Flickering Souls: Illuminating ALS to highlight the decline and loss that people experience with ALS.
Every flicker, every shadow, is a story of a life interrupted.
Advancing Research with ALS TDI
Carol Hamilton spoke at the ALS United Mid-Atlantic Help and Hope Symposium about the ongoing research projects at ALS TDI.
This summer, the ALS United Mid-Atlantic research committee chose ALS TDI (Therapy Development Institute) as one of the recipients of a grant to expand on promising ALS studies. This grant will benefit the BioTek 8 Incubator, which will significantly expand the volume of tests that ALS TDI can run using induced pluripotent stem cells (iPSCs).
Investing in this project demonstrates ALS United Mid-Atlantic’s commitment to the urgency of ALS research. People living with ALS today agree on the need to expedite quality ALS research studies to move science closer to better treatments and a cure. Partnering with ALS TDI is an important step towards making these goals a reality.
A United Approach to ALS Advocacy
Empowering ALS Families
New Jersey Congressman Andy Kim (center) met with ALS United Mid-Atlantic advocates in April.
Advocacy matters every day. This summer, ALS United Mid-Atlantic continued to engage in advocacy to educate and empower people impacted by ALS.
This August, Congresswoman Jennifer Wexton of Virginia introduced the HEALTHY BRAINS Act to bolster research into ALS, Parkinson’s Disease, and other neurological conditions. This bipartisan legislation will help advance projects towards new treatments and better research collaboration.
ALS United Mid-Atlantic is also following new changes from CMS (Centers for Medicare and Medicaid Services) to cap prices for prescription drugs. These changes will go into effect in a few months and we encourage you to ask your social workers and nurses about questions pertaining to your insurance.
As 2024 continues, ALS United Mid-Atlantic will monitor these initiatives and work with allies on legislative priorities including research funding, accessibility, and home care. To learn more, email Tony@alsmidatlantic.org.
Advocating for Accessibility
ALS families frequently face challenges when visiting offices like the Pennsylvania State Capitol in Harrisburg, PA. Parking is inconvenient, elevators are too small for wheelchairs, hallways are narrow, and caregivers end up frustrated and exhausted.
Now, ALS United Mid-Atlantic advocates are adding their stories and experiences to encourage changes to make the Pennsylvania State Capitol more accessible for all.
Upcoming Events
ALS United Walk
ALS United Mid-Atlantic is excited to host three ALS United Walks this September! We are so happy to bring the NEW ALS United Walk experience to Rehoboth Beach on September 7, Ocean City on September 14, and Lehigh Valley on September 28.
The ALS United Walk is the #1 way to fundraise for local care service programs. Your participation has a direct impact on ALS families in Delaware, Eastern and Central Pennsylvania, and Central and Southern New Jersey. If you can’t join us this September, our Philadelphia ALS United Walk will be on Saturday, November 16.
To learn more, visit alsunitedwalk.org.
Mackler 5K
The Scott A. Mackler Memorial 5K Run/Walk is an annual event to support the Scott A. Mackler, MD, Ph.D., Assistive Technology Program. Assistive technology gives a person with ALS new and alternative means to stay active and continue to participate in everyday activities.
The Scott A. Mackler, MD, Ph.D., Assistive Technology Program provides people with ALS access to assistive technology devices and services that are often not covered by insurance policies.
You can support this vital program by signing up for the annual Mackler 5K, which takes place on November 3, at Temple Beth El in Newark, DE.
Celebrating Ben and Dottie Ohrenstein
Ben and Dottie Ohrenstein (center) were recognized during the ALS United Mid-Atlantic Office Opening this August.
ALS United Mid-Atlantic celebrated Ben and Dottie Ohrenstein this August to thank them for over 40 years of dedication to the ALS cause. Ben and Dottie have inspired countless families through their advocacy, support groups, and efforts to advance ALS research.
During the ALS United Mid-Atlantic office grand opening in August, we recognized Ben and Dottie with a new Named Fund to highlight their impact on ALS families.
Celebrating Patricia Kelley Cunningham
George Cunningham (center) was presented with a plaque for the Patricia Cunningham Named Fund to honor his beloved wife.
On Saturday, August 3, George Cunningham held a reception recognizing the establishment of the Patricia Kelley Cunningham Named Fund. The Fund was created to honor the life of Patricia and to support the overall mission of ALS United Mid-Atlantic.
Thirty-three family members and friends gathered to remember Patricia’s engaging personality, her passion for languages, and her deep love of her husband and those who had the privilege of knowing her. Several who attended were former students. To learn more about Patricia’s life, visit here.
If you are interested in creating a Named Fund for your loved one, please contact Donna Cleary, Director of Development at 215-664-4133 or donna@alsmidatlantic.org.
Save the Date for the Roger Kirk ALS Golf Outing Hosted by Greg Gross
The Kirk Family have organized their annual golf outing to benefit ALS care and research for over 1o years.
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 alsunitedgolf.org for more information.
Workplace Giving Makes an Impact
ALS United Mid-Atlantic wants to remind you to Give Happy! September 2 kicks off the Combined Federal Campaign (CFC), the workplace giving program for Federal employees and retirees. Automatic deductions from your paycheck directly benefit the ALS community and provide crucial unrestricted funding for ALS United Mid-Atlantic.
We also participate in the Pennsylvania State Employee Giving Campaign and many matching gift programs. For more information and to see if your company matches your donations, please contact Cecilia Loos, at 215-987-6988 or 678-362-9542 (cell) or Cecilia@alsmidatlantic.org.
Combined Federal Campaign: 16700
United Way of SEPA and NJ: 4700
United Way of Delaware: 2562
PA State Employees Campaign: 2000-0026
John Gauger has supported the ALS mission for over 20 years and is a leader with the Rehoboth ALS United Walk.
Volunteer of the Month: John Gauger
For over 20 years, John Gauger has used his time and energy to end ALS, all in loving memory and tribute for his wife Sandra. John first joined the Lehigh Valley ALS United Walk in 2004 and he has supported the Rehoboth ALS United Walk since it began in 2008. Today, John continues to empower his friends, family, and community to lead the fight against ALS.