My interview with Jean Allenbach, American Parkinson Disease Association

My interview with Jean Allenbach, American Parkinson Disease Association, Regional Director West, Upper Midwest and Southeast States. May 11, 2023. Dr. George Ackerman

Please tell me a little about your background and what got you involved with awareness.

I have been in the nonprofit industry for 30 years. I worked for other organizations such as the Muscular Dystrophy Association and March of Dimes. The March of Dimes was going through a restructuring, so I was looking into other organizations. APDA was one of the organizations I was considering, so I went to talk with my neighbor whose husband has Parkinson’s. She told me how common it was, informing me that our neighbor on the corner has a dad with Parkinson’s, and another neighbor has Parkinson’s and another……. I sat there and thought I have been in the field for 30 years and hear nothing about Parkinson’s, but it was literally surrounding me. Something needed to be done about it. I jumped in with both feet and we grew the APDA Northwest chapter from $200,000 to over a million dollars, which allowed us to expanded services, education, exercise/wellness, and support to five states, and we continued to expand country wide.

Recently, I became a regional director at APDA, helping chapters to grow so we can increase awareness and fulfill our mission to provide education, support, and services for everyone impacted by Parkinson’s so they can live their best life.

After being at APDA for six years, in Nov of 2021, my mother was diagnosed with Parkinson’s. Everything went full circle, I not only had insight from speaking to others who were impacted by Parkinson’s, but as my mom’s primary caregiver, it became my reality too.

Can you tell me more about the American Parkinson Disease Association?

APDA is the oldest in the country founded in 1961 when a group of people had family members with Parkinson’s and banded together to do something. We are a grassroots organization, with a very small staff, so we rely heavily on volunteers and community members to help with everything from office work to organizing fundraisers to helping at programs and serving on boards and committees. One thing I love about APDA is we provide help for today and hope for tomorrow. We provide help through support groups, exercise/wellness programs, educational events/materials, information and referrals and so much more. Giving the tools so people with PD can live their best lives today while also providing hope by funding cutting edge research into treatments and cures.

After someone hears “you have Parkinson’s disease” from a medical doctor they often feel lost and alone. The goal at APDA is to make sure that no one feels this way. We are here for them from diagnosis and throughout their journey. Medical professionals only have limited time that they can spend with a patient, and that’s where APDA comes in, we pick up and support those impacted by PD and fill in the gaps where the medical professionals can’t.

What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?

Realizing individuals around me in my life were gaining a diagnosis of Parkinson’s got my foot in the door and helped me make the decision to dedicate my time and energy to PD.

What keeps me going is the people impacted by Parkinson’s. Everyone I meet at a program or group in the community becomes family. We fight for them, help them, and support them. That is what drives me. If I have a fundraiser, a long week of meetings and am tired, I stop and go to a support group with people with Parkinson’s and that energizes me to do more.

Also, with hope for a cure, APDA has been a part of almost every Parkinson’s research breakthrough. Through APDA research grants we provide funds to up and coming researchers who otherwise would not be able to get the larger NIH grants. These initial grants allow them to go on to start their labs and research projects so they can then go on to secure larger grants. If not for the initial funding of APDA, they would not have likely made those advances.

When people call us and say they had Parkinson’s for 10 years and say they have never heard of us, and we want everyone to know we are here to support them. We do not want to be the best kept secret. We want to be a part of their care team.

What would individuals with Parkinson’s want to learn about the APDA?

Individuals with Parkinson’s are best at volunteering and helping with awareness. Without them we couldn’t do the work we do or are planning. Volunteers help with events, peer led support groups, office work, and countless committees. They are our best voices. Individuals with Parkinson’s, caregivers and families help us spread awareness, promote fundraising & educational events, and help share their stories.

APDA is very adaptable. What is done in FL is not necessarily done in CA or NY. We can adapt to meet the needs of members of the community. We value the input of people with PD and their care partners to find out what needs are not being met in the community so we can tailor what we do to maximize the impact locally.

What type of training and how long are the programs?

We have FREE training programs on our website
The APDA has a free training certificate program for fitness instructors that work or want to work with people with Parkinson’s and a training for first responders. APDA holds in person and virtual support group leader trainings, and provides top notch educational materials and videos on countless topics.

What effect can APDA programs have on Parkinson’s fighters?

We have heard from individuals that the programs work. If they go to an exercise program such as Rock Steady Boxing, their symptoms will reduce greatly. They feel much better through moving. Exercise, exercise, exercise, medication, and diet in that order is what the movement disorder neurologists all agree on and preach! Support groups are also vital, when people attend, they feel like they are not alone. Social isolation can greatly speed up the progression of Parkinson’s so weather it is an exercise class, fundraising event, volunteer opportunity or support group, get involved and stay connected.

What would you like to see as a future goal for your APDA?

Picking only one is difficult. This is a current goal but one that will go well into the future, and that is to expand reach to under-served, under-studied and under-represented communities to promote health equality, and access to care and provide education and support in the manner in which they want to receive it. Learning about the needs of people with Parkinson’s that are diverse racially, ethnically or due to socioeconomics, understanding cultural differences, various lifestyles and experiences, and rural communities is key. We have a lot to learn and trust to build but are committed to being adjustable and adaptable in order to reach people impacted by PD.

What events do you participate in?

Every chapter has an Optimism Walk and a Symposium, as well as many other programs and fundraisers such as a half marathon & 5k in Wisconsin, golf tournament in Rhode Island and Atlanta, and a gala & auction in Seattle & Boston just to name a few. I try to get to as many as I can!

A lot of events come because of caregivers and family that want to help awareness like who supports awareness in memory of your mother. Their ideas grow and grow and grow. We are not an organization that raises a hundred million a year. Every check or donation makes a huge difference in what we do. Third party events like someone organizing a fundraiser for their birthday to naming APDA in your Will, can make a huge impact on the services we offer. Everything and everyone can make a difference from small cities to large, they all make a difference.

How can someone get in touch and sign up to help?  What is your website?

Go to and click on your state and contact the chapter in your area. If there is not a chapter, you can reach out to the National office.

Jean Allenbach joined the American Parkinson’s Disease Association (APDA) in 2015 as the Executive Director of the Washington Chapter. Under her leadership the chapter grew into the Northwest Chapter supporting people Oregon, Idaho, Montana, and Alaska and increasing revenue by more than 400%. Now serving as Regional Director for APDA, Ms. Allenbach is responsible for the Western States, Upper Midwest and Southeast where she will provide oversight and strategic leadership to the chapters to enhance mission delivery, generate revenue, and maximize engagement. A Seattle native, Ms. Allenbach attended the University of Washington receiving her bachelor’s in business administration and minor in communications. She has dedicated her 29-year career to achieving growth and impact goals as Public Service Director, KIRO Radio; Special Events Director, Northwest Harvest; Executive and Regional Director at Muscular Dystrophy Association; and State Director, March of Dimes before joining APDA.Ms. Allenbach has received many national awards including the FDR Award for success in reducing preterm birth rates, is a three-time Crystal Award winner from National Association of Broadcasting for excellence in community service and earned the prestigious Mission Triangle Award for achievements in chapter program, communications, revenue development, diversity, and public affairs.

To donate directly to the APDA In memory of my Mother, Sharon Riff Ackerman to voice awareness and hope for a cure for Parkinson’s Disease please visit