A Look Back at 2022

So much happened in 2022, and none of it would have been possible without YOU! We wanted to reflect on everything this amazing community accomplished in 2022.

Community Support

• The ALS Support Team, formerly known as our navigation program, provided personalized one-on-one support to more than 550 people impacted by ALS in 2022, higher than 2021! Our goal is that no person impacted by ALS should feel alone or abandoned.  
• Peer Support Initiative, which connects those who are living with ALS, caregivers and loved ones to each other and provides them with a sense of community, grew to include more than 100 new mentors and mentees! 
• We expanded to provide 4 types of support groups in 2022 for people living with ALS, people who have lost a loved one to ALS, people who are current primary caregivers for a loved one living with ALS, and people who are loved ones of a person living with ALS. Totally, we hosted 72 support groups in 2022! 
• Online Resource Center
  • Almost 50,000 people accessed the extensive information and resources available through our Online Resource Center! 
  • More than 100 people signed up for our newly launched email series to help people recently diagnosed with ALS get the critical information they need on next steps without overwhelming them.  
• Education Series
  • We launched and hosted 12 Ask Me Anything ALS events, a series of community-led conversations where people living with and impacted by ALS come together to share their experience and answer questions about a specific topic. 
    • These events hosted over 500 people live, and recordings of the events have garnered over 6,100 views on YouTube as of January 2023.
• Outreach and Inclusion Initiative
  • Our efforts through our Outreach and Inclusion Initiative to support people impacted by ALS in under-resourced and underserved communities led to a 40% increase in ethnic diversity of clients, and an increase in resources that were created by our priority populations, which include people who live more than 200 miles from an ALS clinic and Black and African Americans impacted by ALS.

Organizing

I AM ALS staff and community members:

• Hosted 100 events which were attended by over 7,000 people.

Community members:

• Presented on ALS and their advocacy 15 times at various summits, conferences, councils, and workshops with a combined audience of almost 2,000 people.
• James Clingman and Juliet Taylor began writing articles for ALS News Today. 
  • Read James Clingman’s column, Outspoken, here.
  • Read Juliet Taylor’s column, Thunder Road, here.

May ALS Awareness Event:

• Volunteers placed 6,000 flags at the National Mall in Washington, DC: one for each person living with ALS in the USA  
• Almost 1,000 people visited the installation over 3 days!
• Watch the recording of that day’s speaker series (which was also broadcast live on Instagram) here.

Lou Gehrig Day

• Lou Gehrig Day was a huge success, with ALS community members organizing 38 LGD events in ballparks, bars, schools, and community centers with over 2,400 attendees.
• To make sure next year is even bigger and better, advocates created a new community team in 2022 to start organizing for LGD 2023!
  • Learn more and join the team here.

I AM ALS hosted screenings and Q&As for two ALS related films:

• Sometimes I Shake
  • This moving film tells the story of music professor Dan Nelson as he successfully navigated his life and profession around an ever-increasing shake caused by his Parkinson’s disease, which was followed by an additional and devastating ALS diagnosis. The film takes us through Dan’s final days as he decides if he will marry the woman he loves, when to end his career in music, and how to invest the remaining months of his life.
  • I AM ALS hosted the screening and a Q&A with Dan’s wife, members of the film’s production team, and a person living with ALS.
  • Learn more about the film here.
• No Ordinary Campaign
  • This film tells the story of Brian Wallach and Sandra Abrevaya, I AM ALS’ co-founders! The documentary takes viewers through Brian’s ALS diagnosis, his and Sandra’s confrontation with a broken system, the founding of I AM ALS, and beyond, as they strive to build a brighter future for people living with ALS worldwide. I AM ALS hosted a screening of the film followed by a Q&A with Brian, Sandra, and the filmmakers.
  • Learn more about the film here.

NurOwn Petition:

• A petition encouraging the FDA to hold an Advisory Committee Meeting regarding NurOwn amassed 31,638 signatures. Dan Tate, I AM ALS board member who is living with ALS, hand-delivered the petition and signatures to Dr. Peter Marks at the FDA.
  • Learn more about this petition and what we hope it will accomplish here.

Community Teams

The Many Shades of ALS Team

• Hosted/participated in 7 events with over 484 attendees, including:
  • STAT Summit
    • Video of co-lead Katrina Byrd speaking at this event can be found here.
  • “Where Research Meets Reality” in collaboration with Black in Neuro
    • Video recording of the event can be found here.
  • Let’s Talk About It – A Mental Health Series
  • Paralyzed Veterans of America (PVA) Conference
• Collaborated with Black in Neuro for two events
• Hosted its first Spanish language event in collaboration with ALSA Golden West and created a Spanish language resource page
• Published articles and op-eds on ALS, air travel, and COVID’s impact on people with disabilities 
• Launched the Boa Flouncer Campaign to thank fellow ALS community members.
  • Insert pics.

Community Outreach Team

• Hosted 10 Tim Lowrey ALS Panels that reached over 400 audience members in various organizations and fields of study
  • Watch an example panel here, and request a panel of your own here!
• Published articles and op-eds on ALS airline travel and COVID’s impact on people with disabilities 
• Turned Niagara Falls blue for ALS awareness!
  • Check out a photo here.
• Amplified ALS resources from various ALS non-profit organizations and community groups

Clinical Trials Team

• Hosted an ALS Action Summit on March 2-3, 2022 to engage stakeholders in the ALS community to improve the clinical trial experience for people living with ALS and their caregivers. Summit participants included people living with ALS, loved ones and caregivers, physicians, clinical research coordinators, advocacy organizations, biopharma allies, and key government stakeholders.
  • A more detailed breakdown of the summit and the key takeaways can be found here.
• Maintained and promoted ALS Signal, I AM ALS’ dashboard for clinical trials and observational studies related to ALS
• Met with numerous pharmaceutical companies to help guide their ALS research and encourage humane trial design
• Engaged with several leading ALS researchers and physicians re: enhancing the clinical trial design

Veterans Team

• Presented twice to the VA Hospital system, educating 110 VA employees on ALS and ALS resources
•  Participated in Wreaths Across America to honor veterans we’ve lost to ALS
  • Photos of this event can be found here.
• Awarded the inaugural Veteran Champion Award to Leah Darling at the VA Medical Center in Indianapolis!
  • Photos of this event can be found here.
• Wrote a comprehensive response to VHA Directive 1101.07 The ALS System of Care
• Created 3 guides to help veterans living with ALS and their loved ones navigate the Veterans Health Administration:
  • VA Checklist for Veterans Living with ALS
  • Planning Guide for Loved Ones of a Veteran with ALS
  • I’m a Veteran Diagnosed with ALS — Where Do I Begin?
• Presented a poster to the ALS/MND Symposium for the second year

Legislative Affairs Team

• 620 ALS advocates signed up to help the legislative team by becoming go-to constituents in their districts!
  • Learn more and sign up to become a constituent here.
• Secured $100 million for Expanded Access Programs to help people access therapies through ACT for ALS ($25 M for FY22 and $75M for FY23) 
• Successfully advocated for two Advisory Committee meetings with the FDA 
• Secured $40 million in Department of Defense (DOD) funding for ALS research
• Thanked all 532 members of the House of Representatives and Senate who cosponsored the ACT for ALS
• Completed over 100 appropriation forms for Congress regarding funding priorities for the ALS community
• ALS advocates used I AM ALS website to send 10,448 emails to Congress
  • Air Carrier Access Amendments Act- 349
  • AUTO for Vets – 99
  • Justice for ALS Veterans Act – 814
  • CONNECT Act -1261
  • Promising Pathway Act – 7925
• Secured $80 million in fiscal year 2023 funding for Act for ALS with $75 million specifically for the Expanded Access Program (EAP) to help get medicines into bodies of people with ALS
• Helped pass the AUTO for Veterans through Congress and get signed into law 

Familial ALS Team

• Implemented and finished a survey of pre-symptomatic ALS gene holders and their willingness to prophylactic treatment and presented this data at the International Symposium on ALS/MND
• Launched these informative articles:
  • How I Talked to My Teens About My Genetic Status, by Mindy Uhrlaub
  • My Research Experience, by Jean Swidler
  • Understanding Your Rights Living with an ALS-Related Genetic Alteration
  • Having Children While at Risk of Familial ALS
  • Participating in ALS Research
  • Tucker Olson’s family story

Thank You Squad

• Sent over 4,400 handwritten thank you notes to donors to I AM ALS, and their team grew by 10 members. They also welcomed long time member Abby Sims as a co-chair.