APDA’s Grassroots Network: APDA Chapters

Get to know the American Parkinson Disease Association Chapters

American Parkinson Disease Association (APDA) is the largest grassroots network serving the Parkinson’s disease (PD) community. This network is comprised of APDA Chapters and APDA Information & Referral (I&R) Centers across the country, through which we provide critical resources, programs and services to people living with PD and their families. Our mission is to help everyone impacted by PD live life to the fullest, and our Chapters play a tremendous role in that work.

What is an APDA Chapter?

Each APDA Chapter is a resource for people with PD offering outstanding patient services and educational programs to the local PD community. Our Chapters work hard to elevate public awareness about the disease and raise much-needed funds through Optimism Walks, galas, and golf tournaments, as well as corporate and individual donations to help support APDA’s vital programmatic work and research. These funds help make the programs and services possible, and our APDA Chapters keep locally-raised dollars in the community to support our friends and neighbors with PD every day. And the more funds we raise, the more people we can help.

Chapter staff work locally with volunteers, health professionals, fitness professionals and other practitioners, creating and cultivating relationships in the community. Chapter staff are also always looking for ways to deliver APDA programming to even more people with PD, especially those in underserved communities who might not be aware of everything that APDA has to offer.

To help you better understand how APDA serves people with PD, we wanted to give you a behind-the-scenes glimpse of how APDA Chapters operate and what programs and services they help provide to the PD community. To do this, we interviewed three of our Chapter staff:

Jennifer (Jen) Gillick, Program Director, APDA Northwest Chapter

 

 

Angela Weaver, Program Director, APDA Greater St. Louis Chapter

 

 

Natasha Winterbottom, Fundraising and Events Manager, APDA Iowa Chapter

 

 

(We recently spoke with several of our APDA I&R Coordinators in a previous blog post.)

What are the key functions of an APDA Chapter?

Jen: Our mission is to be a vital local presence providing services to those impacted by PD. Those services are educational programming, as well as information and referrals to classes, groups, and providers. We also raise awareness in our local community and critical funds to support the programs we provide. We are the boots-on-the-ground, we are in the communities, and we are here for every person impacted by PD and connect them with resources in their local area.

Please describe your typical day working for APDA.

Jen: I do lots of different things depending on the day and time of year. We serve a large geographic region (5 states), so we all do a little of everything and there is no typical day! As a Program Director, my two primary roles are planning programs and providing information and support. A portion of my day is always dedicated to communicating one-on-one with people with PD. Sometimes I have a quick conversation and sometimes I need to spend more time speaking with someone who is in a crisis.  In between those calls and emails, I am busy planning our local PD programming, working with support group leaders, or seeking out additional community partners with whom to engage.

Angela: I am also a Program Director. I organize and implement all of our support groups, exercise classes and programming.  I also conduct private one-on-one educational meetings for people newly diagnosed with PD and their families.

Natasha: I wear many hats, but one will always be my favorite – and that is helping anyone who contacts us find what they are looking for to better their daily lives. Fundraising is also a crucial part of my job. I love to raise funds which support our programs, services, events, and research. . I always say Awareness = Funds, Funds = Research, Research = A Cure.

What kinds of APDA programs do you help implement?

Jen: We do a monthly educational series called Take Control which covers a variety of topics presented by local PD experts.  We implement two programs for those newly diagnosed – APDA’s signature PRESSTM* program , and a shorter educational series called Parkinson’s Good Start .

During the COVID-19 pandemic, we initiated  a support program specifically for care partners called Caregiving During Quarantine; and our newest program series is called Passport to Research, a series of conversations highlighting the work of local PD researchers. During COVID, all of our programming has been virtual and is now posted on our YouTube channel, so please check it out! (Note: all upcoming virtual APDA events and programs can be found on the Virtual Events Calendar.) I am also responsible for the publishing of our Chapter’s quarterly magazine The Parkinson Pathfinder, creating our weekly email communications, and managing our community grant program which provides funding to local PD exercise programs.

*PRESSTM (Parkinson’s Roadmap for Education and Support Services) is a specialized eight-week psychosocial support group program developed by APDA and led by a trained facilitator. It is geared for people who have been diagnosed within the past five years.

Angela: We also have a tremendous amount of excellent programming for our community, all of which has taken place virtually due to COVID. I organize all of our exercise programs, which, like in the Northwest Chapter, are posted to our YouTube channel. We know that people far beyond St. Louis , and in fact throughout the country, are exercising at home using our videos. We miss seeing people in person, but it’s been so great to know we’re reaching people well beyond our immediate area with our virtual classes!

We also have a wonderful program for singing called Tremble Clefs, and a range of support groups. We also offer the PRESSTM* program for people newly diagnosed with PD, and specialized programs for cognition, freezing of gait, and more.

I also conduct individual educational sessions for people who are newly diagnosed, which I mentioned earlier. During these sessions, we review the basics of PD and how APDA can help someone navigate this new challenge.

Natasha: Our Chapter has many exercise programs, support groups, grant programs, Patient Aid scholarships, as well as many educational programs.

What is the most common question people ask when they first reach out to you? What do they need help with most?

Jen: There are two categories of individuals who reach out to us most commonly – the newly diagnosed and those in more advanced stages of PD.  The newly diagnosed are usually seeking connection, often a new physician, and education. Those in the more advanced stages are often seeking resources for homecare, a new living situation, financial support, or ways to tackle the challenges of being a care partner.

Angela: We also find that many newly diagnosed people reach out to us. They ask: “What do I do now? What are my next steps?  How do I get a handle on all of this?” They also want to know “what will my life look like in 5, 10, 15 years?” That last question, of course, is not possible to answer since every person with PD is unique. This is hard to hear because most people want to know definitively how PD will affect them. We remind them that APDA is here for them every step of the way.

Natasha: The questions I get are different for every person because every Parkinson’s case is different. But if I had to pick our most-asked questions, they would be: Can you share information on a specific symptom or medication options? Who are the best doctors for PD in my area? Where is the closest support group to me? What exercise would be best for me? 

What part of your job do you find most rewarding?

Jen: I get the most satisfaction when I can help someone feel less alone. Whether that is connecting them with a support group or exercise program, getting them registered for an educational event, or just being a listening ear, it is great to be a resource that is helpful.  The PD community is robust and amazing. No one should ever feel alone in this disease.

Angela: The most rewarding part of my job is interacting with people and knowing I can help them feel better both physically and mentally with all the programs we provide.  When people tell me how the exercise classes we organize have changed their life for the better, or when someone says to me, “I was so scared and confused about this disease until I got connected with APDA”, I know we are doing the right thing.

Natasha: I love my job and I love the people I work with. What APDA offers and funds for those with PD makes me so proud to be part of it.  I would have to say that my overall favorite program we offer is the Patient Aid Scholarship. It provides direct funding to a person with PD to help relieve a financial burden they may have.

Are there any stories that stand out to you where you helped someone with a particularly interesting or complicated situation?

Jen: Yes – this story always sticks with me. One person with PD recounted that the physician who diagnosed her said “You have Parkinson’s disease. Take this medication and I recommend getting your affairs in order”. She reached out to APDA six months later, overwhelmed and thinking she would die soon from PD. I educated her about PD, gave her some resources and invited her to an exercise and wellness-focused event that was being held in a few weeks. At the conclusion of that event, she gave me a hug, told me she’d had a wonderful time and that I’d given her hope.

Angela: Usually after a person is diagnosed with PD by their doctor, they leave the visit with a lot of unanswered questions and concerns. One day I had a PD 101 session scheduled with a married couple in which the wife was recently diagnosed.  She came in with her husband and I knew she was very upset and nervous. She had researched PD online and found many upsetting discussions and images and she was sure that she was doomed.  It turns out that she had very mild symptoms, was an avid exerciser, and was in great physical shape. We talked about the symptoms of PD and how everyone’s PD is different.  I wanted her to meet some people with PD and since we had an exercise class just getting started in the adjoining room, I took her over there to show her the space and to say hello to everyone. A man who was newly involved with APDA after his own recent diagnosis saw that she was quite upset and came over to us.  He told us his story. He had had a hard time accepting his PD diagnosis until he reached out to APDA.  Once he became involved with us, interacted with other people with PD, and felt supported, his fears were calmed and he was reassured that he could handle whatever came his way. He gave our new friend a hug and said, “It is going to be OK, you are in the right place.”  I could tell that that gesture ushered in feelings of relief and hope.  She started coming to exercise classes and support groups and remains very active with our APDA Chapter.  As she walked out the door that day she smiled and said “Thank you so much for taking the time to help me today.  You have no idea how much this means to me.”  This is exactly why we do what we do.  These are the people we are here for. This is the purpose of every APDA Chapter!

What advice would you give to someone who has been recently diagnosed with Parkinson’s Disease?

Jen: Take your discovery of PD one step at a time and at your own pace as you can easily become overwhelmed. You are the expert in your life, so educate yourself and then take an active role in your treatment.

Angela: Stay as active as you possibly can. Do things that bring you joy.  Make sure you exercise. Find people you can connect with and with whom you can share what you are going through.

Natasha: Keep a positive mindset. You are not alone and you will still live your life to the fullest! There are many sources of support out there. Give us a call and we will help you along your whole journey!

Tips and Takeaways

  • APDA Chapters around the country are an integral part of the grassroots reach of APDA
  • APDA Chapters provide educational and wellness programming to people with PD and their care partners
  • APDA Chapters raise critical funds to support APDA’s vital programmatic and research commitment
  • Our Chapter staff is a dedicated group of individuals who work with the local PD community to help everyone impacted by PD live life to the fullest
  • To see if there is an APDA Chapter near you, visit the Community page of our website or call us at 800.223.2732
  • No matter where you live, you can take advantage of the many virtual programs our Chapters provide. Visit the Virtual Events Calendar to see what’s coming up next!

Do you have a question or issue that you would like Dr. Gilbert to explore? Suggest a Topic

Dr. Rebecca Gilbert

APDA Vice President and Chief Scientific Officer

Dr. Gilbert received her MD degree at Weill Medical College of Cornell University in New York and her PhD in Cell Biology and Genetics at the Weill Graduate School of Medical Sciences. She then pursued Neurology Residency training as well as Movement Disorders Fellowship training at Columbia Presbyterian Medical Center. Prior to coming to APDA, she was an Associate Professor of Neurology at NYU Langone Medical Center. In this role, she saw movement disorder patients, initiated and directed the NYU Movement Disorders Fellowship, participated in clinical trials and other research initiatives for PD and lectured widely on the disease.

A Closer Look ArticlePosted in Living with Parkinson's

DISCLAIMER: Any medical information disseminated via this blog is solely for the purpose of providing information to the audience, and is not intended as medical advice. Our healthcare professionals cannot recommend treatment or make diagnoses, but can respond to general questions. We encourage you to direct any specific questions to your personal healthcare providers.