The ALS TDI Leadership Awards are presented to people who have been nominated by our community in recognition of their exemplary leadership in the ALS space.
The ALS Therapy Development Institute (ALS TDI) is proud to announce the 2023 Leadership Award recipients: Clara and Ellie Wetzel, Brady and Brooklyn Yozwiak, Lorri Carey, Juan and Meg Reyes, Brooke Eby, Mandi Bailey, and Kevin Robinson. These award winners were chosen from dozens of nominations submitted by members of the ALS community. We are also ecstatic to share that all of the honorees will be present at this year’s ALS TDI Summit and White Coat Affair Gala.
You can read the descriptions of the awards and see the past award winners here.
2023 Leadership Award Winners
Alexander Heywood Award - Clara & Ellie Wetzel and Brady & Brooklyn Yozwiak
In the inaugural year of this award, we have two incredible pairs of siblings who are fighting to make a difference in the ALS space.
Brady & Brooklyn Yozwiak - After his dad, Chris, was diagnosed with ALS in 2020, then 7-year-old Brady knew he wanted to help, but how? Two years later, with the help of some amazing classmates, Brady got to work, raking leaves around his neighborhood this fall. The effort, known as “Clayton Rakes,” has raised an incredible $60,000 for ALS research. Volunteers from the community pitched in to help, sometimes with 50 people showing up on weekends to rake. Residents paid to have their lawns serviced, while others donated online to help the effort. His sister Brooklyn has been his biggest cheerleader and will be gathering her friends to participate this year as well. Due to the success of Clayton Rakes, Brady and Brooklyn's efforts have now grown into a national campaign called, "Rake for ALS."
Clara & Ellie Wetzel- Clara and Ellie never got to meet their grandpa, Brian Emerick, because of ALS, and they wanted to do something to honor him. Beginning in 2018, Clara and Ellie created an idea to help raise awareness and funds for ALS. The girls wanted to carry on with the idea of “ice” from the Ice Bucket Challenge, and they came up with the idea of hosting Iced Tea stands for ALS. To date, they have held over 27 iced tea and lemonade stands from Main Street in their NJ hometown to the US Capitol and Parliament Hill in Canada. They have raised over $75,000 for ALS charities. The girls serve each glass with a smile and a few facts about ALS. They have inspired their classmates and friends to hold their own iced tea and lemonade stands for ALS research. After the first stand, Clara (then aged 6) commented “Mommy this is better than going to Disney World because we are helping people.” And Ellie and Clara vow to continue pouring tea and spreading hope until there is a cure!
Fran Delaney Challenge & Respect Award – Mandi Bailey
Mandi began her journey with ALS advocacy in 2018 after losing her stepfather, Fred Drinkwater, just 12 months after his diagnosis. After his passing, she found ALS TDI through social media and set up a phone call, which she references as one of her big “before and after” life-changing moments. Her first experience with advocacy and ALS TDI was when she hosted a local awareness and fundraising event, Cocktails for a Cure. The images she made to promote the event have been shared globally and inspired other ALS advocacy organizations to create their own images to raise awareness. These eventually led to her annual fundraising project, the End ALS Calendars, which has raised over $10,000 towards ALS research. But that was just the beginning for Mandi. Along with fundraising for ALS TDI she also volunteers with I Am ALS(IAA), where she co-leads the IAA Veterans Team, is a member of the Community Outreach Team, Thank You Squad, and Peer Mentoring Program. She has also spoken at the Paralyzed Veterans Summit about the importance of collaboration to ensure the highest quality of care for Veterans impacted by ALS. She has represented the Veterans Team at the International Symposium on ALS/MND and will be doing so again this year in Basel, Switzerland. Mandi is a NEALS Research Ambassador, speaks to middle school civics classrooms about the importance of a civics education using her experiences as an ALS advocate, advocated for the passage of ACT for ALS, and is part of the R1 Clinic Survey Crew that put together an ALS Clinic Advisory.
Mary Lou Krauseneck Courage & Love Award – Lorri Carey
Lorri Carey was diagnosed with ALS in 2004 at the age of 38 and has been incredibly courageous and loving to the ALS community ever since. Her sons founded Kids4Cure and have raised over $1 million for ALS care and research. Lorri, 15 years after her diagnosis, wanted to do something with all the “extra time” she was given to inspire others and founded the “I’m Dying to Tell You” Podcast. Lorri’s podcast features many who are finding light in the darkest times. “Doing the podcast has been the greatest gift to me. Each guest brings their own beautiful outlook on joy, faith, love, or courage. I am so incredibly lucky to connect with them.” Lorri spends weekends visiting breweries that are part of the Ales for ALS program to help raise awareness and thank brewers. This summer, she even rode 400 miles for the virtual Tri-State Trek. For those who are lucky enough to meet Lorri in person, you can immediately tell that she exemplifies the description of the Mary Lou Krauseneck Courage & Love Award, and we are so proud to know her!
Stephen Milne Adventurous Spirit Award – Brooke Eby and Juan & Meg Reyes
Brooke Eby- Since getting ALS at the age of 29 (just like ALS TDI’s founder Stephen Heywood), Brooke has been tackling the disease with her secret superpower: Levity. Her online persona, "LimpBroozkit" took TikTok by storm and allowed people who may have never heard of ALS to get a glimpse into a world they would otherwise not see, like doctor visits, changes in equipment, family support, and most famously, the taste of Relyvrio. Her use of humor to draw attention to one of the worst things someone can experience is remarkable and a beautiful way to shed some light on the darkness that is this disease. Brooke has been a viral force unseen by the ALS world since the Ice Bucket Challenge. In May of 2023, she launched an Instagram campaign fundraising for ALS TDI which raised over $100,000 and was then matched by an anonymous donor "KJ". She has been featured on the Today Show, The Morning Toast Podcast, and many other media outlets. She continues to work at Salesforce after her diagnosis and leverages her unique position to share and educate those about ALS. She is also an active member of Her ALS Story, a group of young women diagnosed with ALS before 35, which won this same award as a group in 2022.
Juan & Meg Reyes- Being a veteran, Juan was shocked to learn after his ALS diagnosis that veterans are twice as likely to develop ALS. After meeting others fighting for change, he was motivated to become an advocate himself. Eight years later he is engaged in advocacy nationwide through multiple organizations. Although he participates in many campaigns, he also knows it is imperative to continue living fully. Juan and his wife, Meg, decided to follow through on their retirement bucket list of traveling in an accessible RV motor home. Juan and Meg have since logged over 16,000 miles, meeting so many of their ALS community on their travels, spreading love and joy, and of course stopping at their favorite breweries for an Ales for ALS. The trips have been phenomenal in so many ways; the souls that have touched their hearts most of all. Juan says “Never let the life you are given get in the way of LIVING!”