An interview with Susan & Gretja Otten: Appalachian Trail for PD Awareness held July 1, 2023 by George Ackerman, Ph.D, J.D.
Biography
Susan Otten founded Indie Do Good with the purpose of helping businesses grow while improving their social impact. While offering companies services (logistics, marketing – strategy & communications, operations, and engineering/manufacturing consulting), her team also evaluates companies for investment. Susan has also been a successful consultant and held numerous leadership roles in a variety of industries, including Apple for 15 + years, plus global roles with two agriculture companies and as a COO at a behavioral health consulting company.
Susan has her BS from the UofM and MBA with concentration in Marketing from Benedictine University, Chicago. She is Past President of IABC Minnesota along with accreditation as ABC and SCMP, adjunct professor in the Business School of Crown College, long-time volunteer in Children’s and Women’s ministries and an active speaker telling her story of lessons learned while hiking the Appalachian Trail with her daughter to raise over $93,000 for Parkinson’s Disease research with The Michael J. Fox Foundation.
Please tell me a little about your background and what got you involved with awareness.
My husband, Ron, was diagnosed in 2010 with Parkinson’s Disease when we were living in Atlanta. He has done very well with the disease, staying very active, working, and enjoying time with our family, especially if it involves time on any lake.
Can you tell me more about your Advocacy?
Our daughter, Gretja, has been especially active in raising funds to help find a cure through marathons and by doing the Wisconsin Ironman (with the hilliest bike course in the lower 48 states) during her 4th year of Veterinarian School at the University of Wisconsin in Madison. In 2021 she wants to do something “bigger” that would inspire people and raise awareness. When her best friend from undergrad was not able to do the trek with Gretja, I stepped in. I love hiking and didn’t want her to do the 2194.3 miles from Maine to Georgia on her own. See our videos for more info. See https://www.youtube.com/@appalachiantrailforparkins1185
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?
Watching my husband/Gretja’s dad’s decline and learning more about Parkinson’s helped me to develop a greater understanding of what I could do to help find a cure.
Fundraising was obvious, as both Gretja & I have done big fundraisers before. I’ve also become a participant in the PPMI study (Parkinson’s Progression Markers Initiative research, launched in 2010 with a mission to identify biomarkers of Parkinson’s Disease onset and progression)
What type of goals do individuals with Parkinson’s have when working with you?
We want others to know a cure is getting closer all the time. In fact, this year at the MVP Gala to celebrate fundraisers in NYC in April this year, a newly discovered bio-marker for Parkinson’s was announced. This is the first time we can screen for a with a 93% accuracy to diagnose Parkinson’s before the onset of symptoms.
What type of training and how long are the programs?
Parkinson’s is debilitating but getting involved in helping to find a cure is empowering. It’s especially hard for those caring for loved ones and watching their decline.
What effect can it have on an individual with Parkinson’s?
Parkinson’s is debilitating but getting involved in helping to find a cure is empowering. It’s especially hard for those caring for loved ones and watching their decline.
What would you like to see as a future goal for your programs?
- A cure is found.
- Bio screening becomes a standard diagnostic test, so treatment can start sooner and before symptoms affect people’s lives.
What events do you participate in?
Our Appalachian Trail for Parkinson’s Disease took us from July 15th to December 21st of 2022. We were 154 on trail, carrying all we needed in our backpacks and sleeping in our tent along the way. In 2022 I am helping the national “Targeting a Cure” event at Topgolf on October 15th by hosting the Minnesota location.
How does this also assist the caregivers?
Caregivers are the unsung heroes; they are giving so much to support their loved ones. Just to know there is a caring community to help, to talk to, to lean on, along with the MJFF with info and resources, makes so much difference!
How can someone get in touch? What is your website?
Our Appalachian Trail donation site will be shut down soon, but when it does and if people still want to donate, they can donate on the TeamFox donation site to Gretja’s marathons:
Bank of America Chicago Marathon on October 8 and
TCS New York City Marathon on November 5.
https://fundraise.michaeljfox.org/endurancegeneral/ATforPD
If you had one final statement or quote you could leave for the Parkinson’s community, what would it be?
This effort to find a cure literally takes a village. We NEED people to get actively involved with donations AND active advocacy.
When we were hiking the Appalachian Trail, over 25 TOTAL STRANGERS reached out to us to offer their support by giving us a ride from the Trail to their home (and back again to the Trail), let us take (hot!) showers, do our (stinky!) laundry, cook us yummy, healthy (except for the mountains of ice cream!) meals, helped us get re-supplied and covered us in prayers. Gretja named this, “The Beautiful Mystery” as we never really understood while on the Trail WHY people we didn’t even know were so amazingly kind and generous to us. Now we understand. They were a big part of the caring community who understood we were not going to be successful without help. Just like the caring community seeking a cure.
Additional links:
Help Find a Cure
If you feel moved to donate to our cause to raise funds for Parkinson’s Disease research (we’re currently over $92,000! and would love to get to $100,000), you can here:
https://fundraise.michaeljfox.org/endurancegeneral/ATforPD
YouTube Channel
If you want to learn more about our thru-hike of the Appalachian Trail, check out our YouTube channel (96 videos, including a summary of the whole trail in < 1 hour!):
https://www.youtube.com/@appalachiantrailforparkins1185
CBS National Morning News:
https://www.youtube.com/watch?v=kdeUQ9c2Nms&ab_channel=CBSMornings
CBS National Evening News:
https://www.cbsnews.com/video/hiking-trip-brings-mother-and-daughter-closer-for-a-good-cause/
WCCO – Minnesota’ local CBS Affiliate
1st interview in Studio before Start:
https://www.youtube.com/watch?v=-usOTtTjr4Y&t=41s&ab_channel=WCCO-CBSMinnesota
Interview During COVID Quarantine:
https://www.youtube.com/watch?v=q2Y2GuVh0To&t=3s&ab_channel=WCCO-CBSMinnesota
Our Finish:
https://www.youtube.com/watch?v=jbxdYteczcM&ab_channel=WCCO-CBSMinnesota
Mother’s Day:
The Michael J Fox Foundation Blog
For International Women’s Day featured post:
https://www.michaeljfox.org/news/watch-now-susan-and-gretja-otten-share-hike-their-lives
AARP’s website
AARP filmed our story and posted it on their website for their 38 million members (and others) to enjoy.
LinkedIN Post:
Training, Team, Tools: Correlations between Trail & Work
https://www.linkedin.com/feed/update/urn:li:activity:6959287728337297408
Wayzata Together
Featured cover story in local community magazine.
https://img1.wsimg.com/blobby/go/15993dbe-2b84-4277-8a16-06c2dd84030c/WAYTOGapril23emag.pdf
TikTok
We were featured on DadChats TikTok (490.5K followers) as their “1Good Thing Wednesdays” feature on 5/24/23. DadChats (Dillon) to honor what would have been his dad’s 87th birthday specifically asked for his followers to help get us to our “wishlist” goal of $100k!!! https://www.tiktok.com/t/ZTRE4qQDc/