Dear Friends,
It’s hard to believe that fall is upon us and 2022 will soon come to a close. It has been an incredibly busy year; starting with our Education & Resource Summit, continuing with our Walk to Defeat ALS program, and following with the launch of our brand new support group series, Talk. Learn. Connect.
During this past year, we have also seen advancements in research and approval of new drugs. In May, an oral formulation of the drug Edaravone, produced by Mitsubishi Tanabe Pharma America (MTPA) was approved and just days ago, on September 29th, the Food and Drug Administration (FDA) approved Amylyx’s AMX0035, now labeled Relyvrio. The Association’s support of Relyvrio began in 2016 when $2.2 million of Ice Bucket Challenge donations were invested to help develop and test what was then a promising experimental treatment. This means that Relyvrio is the first approved treatment funded by the Ice Bucket Challenge and the millions of people who participated and donated. Thank you!
As I write this, we are gearing up for our first in-person Lou Gehrig Legacy Gala in nearly three years, to be held on November 7th at Pier Sixty, Chelsea Piers, New York City. I look forward to working with the many incredible honorees within the hockey community to raise awareness and much-needed funding for the families we serve. Read more about our Gala honorees and all of our other exciting news below.
Even as the leaves start to fall, there seems to be a buzz in the air of possibility and hope for what we can accomplish together.
Warmly,
Kristen Cocoman, President & CEO
SPECIAL Events
Walk to Defeat ALS
We had a very successful Walk season, seeing more than 6,500 walkers participate in six Walks from May through October, and raising over $1.4 million. Our 2022 Walk to Defeat ALS season wraps with the upcoming Hudson Valley Walk on Sunday, October 16 in Highlands, NY at the Walkway over the Hudson. Your support, commitment, and fundraising efforts are key to helping us UNLOCK ALS, and ensuring that the ALS community continues to receive the highest quality of care. Visit alswalks.org to become a leader in the fight against ALS.
Iron Horse Golf Classic
The 2022 ALS Iron Horse Golf Classic enjoyed its fifth successful year on Tuesday, August 9, at Sands Point Golf Club in Sands Point, NY. More than 100 golfers enjoyed a great day on the course, followed by a dinner and raffle. The event raised $125,000 to support The Greater New York Chapter.
amylyx news
On September 29th, the FDA approved AMX0035 (now known as Relyvrio) to treat people living with ALS. Relyvrio, while not a cure, is a victory for the entire ALS community and a significant step in the battle against ALS.
In the summer of 2014, millions of us took part in the ALS Ice Bucket Challenge. Celebrities, friends and family members all dumped ice on their heads to help raise awareness and funds for ALS. Thanks to everyone who donated, one of the potential treatments that the ALS Association funded was AMX0035.
The ALS Association spent over $2 million helping fund the development and clinical trial of AMX0035. In September of 2020, The ALS Association and I AM ALS submitted over 50,000 signatures to the FDA calling on the agency to approve AMX0035. In subsequent months, the Association and advocates held multiple meetings with FDA officials, including a public We Can’t Wait Action Meeting in May of 2021, so members of the ALS community could speak directly to FDA officials. Before AMX0035 will be made available, payers like Medicare and private insurance companies have to make determinations on whether and how they will cover the drug.
Importance of Monthly giving
From research advancements to increasing care services, we are reaching new heights every day in the ongoing fight against ALS. Becoming a monthly donor provides unparalleled support to people living with ALS and their families who depend on Chapter resources. Setting up automated monthly gifts in the amount of your choice creates sustaining support for this ALS community. When you become a monthly donor, your donation is ongoing until you say otherwise. Your credit or debit card will automatically be billed each month. You’ll save time, money, and resources. Join us in making a monthly gift today!
Pet Therapy
My husband Guy has ALS. He gets wonderful care from a host of angels at home and an amazing hospice and palliative care group. One of the therapies offered is Pet Therapy. While Guy and I are "dog and animal people," our home has been dog free for a while. So when Pet Therapy was offered, we looked at each other and replied with a resounding “yes!”
Once or twice a month, the most beautiful Golden Retriever named Chief and his compassionate owner come to visit. Immediately the stress level in the house goes down and a big smile appears on Guy’s face. Chief puts his head on Guy’s lap, while we place Guy’s hand and arm around the pup’s head and neck. They sit in that position for almost an hour. While we chat with the owner, Chief sleeps contentedly changing his position only occasionally. Guy smiles the whole time.
The company of Chief is a lasting presence and after his visit, calm happiness remains for the rest of the day. - Submitted by Guy's wife, Rhea De Blasio (Photo: Guy Gerace & Chief)
The Lou Gehrig Legacy Gala
We hope you will join us on Monday, November 7th at Pier Sixty in New York City for the annual Lou Gehrig Legacy Gala led by our Master of Ceremonies, Jeremy Schaap. The evening will include the presentation of the Jacob K. Javits Lifetime Achievement Award to Gary Bettman, Commissioner of the NHL as well as the Lou Gehrig Sports Awards presented to New York hockey legends Pat LaFontaine and Henrik Lundqvist. The 2022 Champion Award will be presented in memory of Rod Gilbert.
The cocktail reception and silent auction begin at 6:30 pm, followed by dinner and the awards presentation at 7:30 pm. Tickets and tables are available for purchase. Please contact 212-720-3052 or events@als-ny.org for more information.
TALK. LEARN. CONNECT.
The ALS Association Greater New York Chapter launched a new program called Talk. Learn. Connect. in July. This program offers a variety of speakers to increase one's knowledge about community resources and effective strategies for living with the disease. These programs are available several times a month over Zoom and have resulted in increased visibility and attendance. One of the most popular programs offered so far was Adaptive Clothing, which focused on articles of clothing, which are easy to manipulate, remove or put on. A special aspect was viewing some videos from a recent Adaptive Clothing Fashion Show which was held at the Bronx VA.
Another very popular presentation was Travel Tips which focused on all aspects of travel for the disability community like air, car, hotels, and cruises. Coming up in October is Assistive Technology. TLC offerings are in addition to ongoing support groups, which continue to offer safe, confidential spaces for those living with ALS and their loved ones to come together and connect through sharing and mutual support. These groups are facilitated by our regional care Coordinators. Click here for monthly schedules.
Team ALS - NYC Marathon
Running is in my family. We have a tradition of participating in the local Thanksgiving Day race every year that was started by my grandpa, Robert Denny, who we lost to ALS in 2014. But the New York City Marathon has always had a special place in my heart. My father and grandfather both ran it years ago, well before I ever thought of going out for a 26.2-mile race. Once I got to experience it in person, cheering on my dad in 2006, I remembered thinking that someday I will be back to carry on the Denny tradition of running the NYC Marathon.
The hardest part about having a loved one be diagnosed with ALS is that Grandpa Denny was still as sharp and quick in his mind as always. But starting in 2014, after being diagnosed two years earlier, the disease began taking its toll, from getting a feeding tube installed to using a dry-erase marker to communicate with people. He sadly passed away on October 7th, 2014. In his last six months, he watched me walk across the stage from my college graduation, saw my cousin get married, and completed the Cincinnati ALS walk while running in the last 50 yards.
He was and is my inspiration to keep running (this will be marathon #7 for me). That is why I chose to run with The ALS Association Greater New York Chapter because I want to run for a cause that is very near and dear to my friend's and family's hearts. The overwhelming level of support is something I couldn't have dreamed about as I prepare for the NYC Marathon in November. I know when I hit the starting line on November 6th, I will be running for more people than just myself, and I am thankful to be a part of it. -Jeffrey Denny, TEAM ALS (Photo: Jeffrey with his grandfather and brother, Brian in 2014.)
Jeffrey has raised over $4,000 for The Greater New York Chapter. The ALS Association Greater New York Chapter will be among more than 400 official charity partners participating in the 2022 TCS New York City Marathon on Sunday, November 6th. If you would like to make a donation to any of our 60 participating runners that are running with Team ALS click here.