By 2013, I had run a marathon and done 9 triathlons, including a 70.3-mile half Ironman.
In 8 months I went from the strongest I’d ever been to walking with a cane – and I was diagnosed with ALS in May 2014, at the age of 33.
So what do you do when you’re told that you’re going to die in the next 2-5 years? That there is no treatment and no cure.
And that before you die, you will lose the ability to walk, talk, move, eat, and breathe?
My husband and I had just bought a house. We were planning to start a family.
I realized is that if there was something I really wanted to do – I needed to do it now.
We bought a recumbent trike and I signed up for my “last” triathlon, which became the most extraordinary day of my life as 100 people stayed to cheer us in and we were featured in Endurance magazine.
I wanted other people to experience the amazing feeling of crossing the finish line of a race you weren’t sure you could do. I challenged my friends & family to take on a race that would be a challenge for them as an opportunity to raise money for ALS research – and that became Team Drea.
We started a 501(c)(3) foundation so that we could organize events and direct the funds raised to the most promising research out there. From cornhole to cheering on runners at the RDC Marathon, our events inspire people to get out of their comfort zones and appreciate what their bodies can do.
And that feels like a victory over ALS.
As for me, I did a half marathon and marathon in 2015…and then thought, “I’m TIRED of waiting around for this disease to kill me.”
So I made a crazy plan to do 12 races in 2016 (which I did)…and 2017 (which I did)…and 2018 (which I did). And I’m not dead yet – I’m actually getting faster!
Now my crazy goal is to do a marathon in all 50 states. It is a lifetime goal for many runners – my lifetime may just be a little shorter than theirs. But who’s to say?
Being outside, feeling my muscles move, breathing hard… these are all things I shouldn’t be able to do. These simple joys are denied to people with ALS as they are forced to watch themselves die, muscle by muscle.
So I will be out on my trike for as long as I can, to celebrate freedom of being alive, and to raise money and awareness about ALS.
I invite you to challenge yourself and appreciate what your body can do.
11/27/17: Wake County woman not letting ALS stop her from racing, CBS 17
08/02/17: Cary woman with ALS won’t stop competing, inspiring, abc11
04/12/17: Andrea Lytle Peet ’03: Live Bravely and Appreciate Life, Davidson College
10/25/16: In Depth: ALS Patient Inspires Through Long Distance Races, Spectrum Local News
11/1/15: Woman with ALS completes City of Oaks marathon, abc11
03/25/15: Making Her Mark,Runners World/Zelle
02/18/15: An athlete diagnosed with ALS helps the fight to find a cure, She Is Noble nomination
01/02/15: Feature: 179, Endurance magazine
ABOUT THE TEAM DREA FOUNDATION
Andrea Lytle Peet created Team Drea in 2015 when friends kept remarking that her story had inspired them to take on a big challenge – an Ironman, a half marathon, a triathlon. She encouraged friends and family to take on a race that represented a challenge to them and use it as an opportunity to raise money for ALS research. Team Drea has grown to 150+ athletes in 22 states, Canada, and the U.K, and raised more than $400,000 for ALS research. In October 2016, Andrea and her husband David incorporated the Team Drea Foundation as a 501(c)(3) in order to leverage the momentum they have built thus far, and to maximize the flexibility of their support to invest in the most promising ALS research on the horizon.
The Team Drea Foundation supports bold, innovative research to find a cure or effective treatment for ALS. We see raising awareness about this devastating disease as an opportunity to inspire people to live bravely, love joyfully, and appreciate the gift of life.
Research We Support:
At this time, Team Drea supports two organizations that are passionately dedicated to research. They keep their overhead costs low and innovation high.
ALS Therapy Development Institute (ALS TDI)
ALS TDI is the world’s first and largest nonprofit biotech firm. The organization focuses on pre-clinical trial research and the development of drug therapies for ALS. In 2018, ALS TDI became the first nonprofit in any disease to have a drug, AT-1501, enter human clinical trials.
Andrea is participating in their Precision Medicine Program, which is using her blood and skin tissue to look for biomarkers and create a stem cell line to study the mechanisms of the disease and screen potential treatments from already approved medical compounds.
Andrea is a national ambassador for ALS TDI and received the Stephen Heywood Patient Today Award in 2016.
Under the direction of Andrea’s doctor, the world-renown neurologist Dr. Richard Bedlack, Duke is performing cutting-edge research on off-label or alternative treatments for ALS: essentially, a scientific evaluation of supplements or therapeutics that ALS patients are trying in the absence of effective treatments in mainstream medicine.
Dr. Bedlack is also studying extremely rare cases of ALS reversals – 40+ people whose ALS symptoms have actually gone away. The approach was successful in HIV/AIDS when doctors began studying HIV patients who never developed full-blown AIDS. They discovered a common genetic link, a protein, that could be synthetically manufactured and added to the treatment cocktail.
BOARD OF DIRECTORS
David Peet, Chair (Raleigh, NC)
David is Andrea’s husband, caregiver, cheerleader, and biggest champion. When he is not scheming with Andrea about a new project or doing his best to keep up with her while she is in the trike, he is working as an attorney from their home in North Carolina, his office in DC, or traveling to work with clients in Latin America. He is proud to serve as a national ambassador for ALS TDI and as a resource for caregivers and people with ALS in need.
Angela McMillen Ayres, Vice Chair (Arlington, VA)
Angela lost a daughter, Lisa McMillen, to ALS in 2015, just two days after Lisa and her twin sister (pictured above), Kat’s 32nd birthday. Prior to resigning to care for Lisa full-time, Angela was Executive Director of the American Association of Political Consultants in DC. Before that, she raised her 4 kids in Akron, OH and was involved in state/local politics there. Angela intends to carry on the work to defeat ALS in Lisa’s honor.
Ashley Griffith Kollme, Secretary
Doug Kollme, Treasurer (Bethesda, MD)
Ashley Kollme is an education consultant with a background in nonprofit fundraising and higher education. She was instrumental in developing the Latino Student Fund’s first college preparation program, LISTO. Ashley is the former Development Director for Mary’s Center for Maternal and Child Care. Ashley currently serves on the boards of the Girls Gotta Run Foundation and Perry Street Prep Charter School. She attended Davidson College with Andrea and Dave, where they were teammates on the club crew team. She is a speed demon, often winning 5k events she enters.
Doug has 20 years of experience in commercial banking, investment banking, and mergers & acquisitions, with more than 15 years as a CFO in the government contracting sector. He has served as a mentor and supporter of the Latino Student Fund’s LISTO program. When he is not chasing he and Ashley’s four kids around, he enjoys getting out for a run himself.
Jason Biggs (Raleigh, NC)
Jason Biggs is co-owner of FS Series, a Triangle-based triathlon and running race company that has embraced the Team Drea Foundation as a charity partner. Jason holds degrees in Sports Management and Technology Education from NC State University. When he isn’t on the megaphone or working behind the scenes at a race, Jason competes in running events, NC Cyclocross, and is a 3-time Ironman.
Amyotrophic lateral sclerosis (aka ALS or Lou Gehrig’s disease) is a progressive neurological disease that affects the nerve cells in the brain and spinal cord. When motor neurons that connect nerves and muscles die, people lose the ability to initiate and control muscle movement. Without stimulation, muscles become weak and atrophy. Most people with ALS become totally paralyzed as they lose the ability to walk, talk, eat, swallow, and breathe.
Every 90 minutes, someone with ALS dies and another person is diagnosed.
The average age of diagnosis is 55; however, cases of ALS also appear in people in their 20s and 30s.
Military veterans are twice as likely to develop ALS as the general population. Athletes also seem to be more susceptible. No one is sure why.
The average life expectancy of a person with ALS is 2-5 years. 20% live 5 years or more; 10% percent live more than 10 years.
The only approved drug for ALS (riluzole), only extends life expectancy by 2-3 months.