Summer Newsletter 2023 The ALS Association Greater New York chapter

Table of Contents

1. Lou Gehrig Day
2. Education & Resource Summit
3. Research News
4. Advocacy
5. Clinic Spotlight
6. Upcoming Events
7. Walking For 15 Years
8. Walk to Defeat ALS
9. Driven to Make a Difference
10. ALS Awareness Month Generosity

Education & Resource Summit

Greater New York hosted the third annual Education and Resource Summit: Navigating the ALS Journey. This year’s two-day virtual event was held on Thursday, May 11, and Friday, May 12, during ALS Awareness Month. This event provides the ALS community with educational resources and updated information from experts in the ALS field. Seventeen guest speakers and staff members led 14 sessions on genetics, research, pharmacological therapies, respiratory care, and nutritional considerations. In addition, the hour-long PBS documentary Matter of Mind: My ALS was highlighted on Thursday evening, followed by a moderated discussion between Debbie Schlossberg, Chief Care Services Officer, and Michele Stellato, one of those living with ALS featured in the documentary. All the sessions are recorded and available for viewing on our website.

Advocacy

State Advocacy

Budget

The New Jersey and New York state legislatures continue to support The Greater New York Chapter by funding critical programs and services for the ALS community. The New York Senate, led by Majority Leader Andrea Stewart Cousins, along with Senator Shelly Mayer, and the State Assembly, have once again helped to secure funding in the '23 -'24 New York State Budget. In New Jersey, individuals living with ALS, Debbie Ruggiero of Cresskill and John Russo of Southampton Township, testified before the budget committees of the New Jersey Legislature, advocating for additional funding. As a result of their testimony, Governor Murphy and the Legislature allocated $1.5 million in the '23 -'24 New Jersey budget for individuals living with ALS.

“While I was happy to share my story, I am overjoyed with the results!” - Debbie Ruggiero

Genetic Testing

On May 29th, Albany’s Times Union published a Letter to the Editor from Kristen Cocoman, President & CEO of The ALS Association Greater New York Chapter, and Liz Krisanda, Northeast Territory Executive of the ALS Association, supporting legislation by Sen. Brad Hoylman-Sigal and Assemblymember Jeffrey Dinowitz that would prohibit insurance companies from charging higher premiums or refusing coverage based on genetic testing or its results, including life insurance, long-term care insurance, and disability insurance. While it did not move out of committee this year, we anticipate robust advocacy on this legislation in the next session.

Federal Advocacy

In April advocates and staff of the Greater New York Chapter participated in virtual meetings with several members of congress who represent those living with ALS in our region. Federal research dollars need to be focused on discoveries that will improve the lives of people living with ALS. We will continue meeting with our congressional representatives in August to request the following:

• ALS Research and Expanded Access Funding – Department of Health and Human Services (HHS, NIH, & FDA): Congress must provide at least $100 million to fully fund the ACT for ALS Act (Public Law 117-79) to help every American living with ALS.
• ALS Research Funding – National Institutes of Health (NIH): Congress must increase funding to support an expansion of ALS research at NIH.
• ALS Research Program (ALSRP) – Department of Defense (DOD): Congress must increase funding to $80 million for the ALSRP.
• National ALS Registry and Biorepository – Centers for Disease Control and Prevention (CDC): Congress must provide at least $15 million to the National ALS Registry and Biorepository to continue the critical work of identifying risk factors for ALS and research on prevention strategies, with an emphasis on ALS prevention in the military.

walking for 15 years

by Christine McClellan

My family Walks to Defeat ALS in remembrance and in honor of Charles Koabel. Our team, Captain Charlie’s Crew, has been walking as a family and with friends for 15 years. The Walk to Defeat ALS event means a lot to my family. My grandpa, Charles Koabel, passed away from ALS in 1989 at the age of 56. He was a Long Island police officer for 21 years and he owned his own moving company. He loved being outdoors fishing and boating. The walk each year brings my family together to honor and remember my grandpa. My family travels from multiple states to Long Island for the walk each September. We do not get together as often as we would like to being that we all live in different states, but we can usually count on seeing everyone each September for the walk.

Grandpa Charlie would have been an amazing grandfather to his 8 grandchildren but sadly he passed away from ALS when his first grandchild was just one month old. My cousins and I never had the chance to make memories with Grandpa Charlie, but the walk reminds us he is watching over all of us, and the walk reminds us to appreciate the time we have together. We come back year after year to remember my grandpa and to support others who are affected by ALS. It is a time for us to reflect on memories of Grandpa Charlie and to create new memories with our family.

Lastly, we walk because we want to make a difference. Captain Charlie’s Crew wants to support the research for ALS in the hope of finding a cure in the future.

Overall, the Walk to Defeat ALS has meant a lot to our family through the years as we remember and honor my grandpa.

Team Captain Charlie’s Crew will once again be participating in the upcoming Long Island Walk to Defeat ALS on September 23. If you would like to join their team or create your own team, you can by registering at alswalks.org

Driven to Make A Difference

by Aidan Blake

First, I want to thank the ALS Association Greater New York Chapter for allowing me to represent them for several events this year and for reaching out to learn more about why I participate in endurance events and races to raise money for ALS. When you asked me why I began this journey, a few reasons came to mind. First and foremost, my grandfather, Richard Tracey, passed away from ALS at the young age of 62. His loss profoundly impacted our family, and learning the devastating effects of this disease firsthand motivated me to take action. I wanted to honor his memory and contribute to the fight against ALS in any way I could.

Not only am I driven to make a difference, but I am also inspired by the support shown by other family members. Many have chosen different avenues to raise money for ALS, including participating in golf tournaments. While golf may not be my forte, I wanted to show my support in a way that resonated with me personally. By participating in tours/races like the 5 Borough Bike Tour, NYC Triathlon, and NYC Marathon, I can combine my passion for endurance events & belong to a team with the important cause of raising funds and awareness for ALS.

My uncle, Chip, also plays a significant role in the fight against ALS as a member of the Board of Directors for ALS in the Heartland. My grandmother, too, continues to contribute through her volunteer work in the annual ALS golf tournament. Their dedication and commitment to the cause have inspired me, further motivating me to get involved and make a positive impact.

Growing up, I admittedly didn't fully grasp the severity of ALS's impact on end-of-life care for those unfortunate enough to be diagnosed with the disease.

However, through my own research and education, I now deeply understand the physical, emotional, and financial toll ALS takes on individuals and their families. This newfound knowledge touched my heart, and I knew that I could do more to do more for the cause.

Thank you again for giving me the opportunity to share my story and shed light on the importance of raising awareness and funds for ALS. Together, we can make a difference and bring us closer to a world free from the grasp of this debilitating disease.”

Aidan Blake, TEAM ALS (Photo: Aidan Blake participating in the TD Five Boro Bike Tour on May 7th, 2023)

Aidan participated in the 2023 TD Five Boro Bike Tour in May and will also be representing Team ALS in the New York City Triathlon on October 1st and 2023 TCS New York City Marathon on November 5th. If you would like to learn more about Team ALS, please contact Christopher Amato at camato@als-ny.org or 212-720-3054.