“Alone we can do so little; together we can do so much.”
—Helen Keller
We recently shared the news that PMD Alliance and Young Onset Parkinson’s Network (YOPN) have joined forces to offer lifetime support for those living with Young Onset Parkinson’s Disease (YOPD) and their care partners. YOPN, a startup-turned-growing-community, was launched when one woman, Anna Grill, decided that there weren’t enough resources for people with Parkinson’s who looked like her (young, still parenting, at the peak of her career), and so she decided to do it herself. As the organization’s growth began quickly outpacing its bandwidth, Anna felt a strong responsibility to the community to secure a sustainable future for the fast-growing YOPN. We’re eager to expand our joint capacity to meet the unique needs of people who receive this life-changing young onset Parkinson’s diagnosis in the thick of life. 
This is the story of how and why we came together.
The first time Anna Grill ever walked into a neurology office 17 years ago, she was 38 years old. She had an appointment with an experienced movement disorder specialist. Anna remembers sitting nervously on the examination table as she waited for the doctor to come in. When the doctor finally opened the door, she stood in the doorway and looked at Anna for what felt like a beat too long. The doctor barely sat down when she said to Anna: “You have Parkinson’s.”
“It was awful,” Anna said. “Before I could even realize what was happening, she had her head in a prescription pad. She handed me the script, said, ‘Go fill this, come back in two weeks. If it works, it’ll confirm your diagnosis.’ I was shocked.” Anna left without taking the script.
Three months later, after getting her young onset Parkinson’s diagnosis from a “more level-headed doctor,” Anna turned to Dr. Google for additional support. But she couldn’t find it. She couldn’t find people with Parkinson’s who looked like her—young, female, a parent and a professional. In fact, she could barely find any resources on YOPD at all.
“Even without any chronic disease,” Anna said, “parents at that period of life are running around with their hair on fire. People with YOPD are often married or have young kids or they’re single and still dating. They’re not going home and putting their feet up after work; they’re getting kids’ lunches ready and going to PTA meetings and they’re in the prime of their careers.” When she looked around at most of the existing Parkinson’s organizations, she couldn’t find anything that spoke to her needs in that stage of life. When she finally got one organization to send her a newly diagnosed packet for people with young onset PD, the first image on the opening page was a silver-haired lady. This just wouldn’t cut it. Anna knew that she and people like her deserved more: to feel seen and supported in their unique needs. She decided to go out and create it herself. Eventually, Young Onset Parkinson’s Network (YOPN) was born.
For ten years after Anna discovered she had Parkinson’s, she and her husband kept her diagnosis to themselves. At the time, Anna was on the fast track as a sales executive at a Fortune 200 company and was the youngest and only woman on the executive team. “I didn’t want another box around me,” she said. “I was the main breadwinner of our family. I was scared of what would happen if others found out.”
And her fears were not irrational. “I can tell you stories about people with YOPD,” Anna told me. “While many companies follow the ADA protections and provide wonderful support and resources to their employees, others, unfortunately don’t follow the rules. I have been told about people who have been unfairly fired after coming out with their diagnosis.” This is why Anna’s commitment to providing safety and security for her YOPN members—a commitment PMD Alliance has fully embraced—is essential to her. By offering a membership structure at YOPN, only those who are registered can join programs; no employer—or anyone not in the YOPN community—can secretly spy on what’s happening.
Andrea Merriam, PMD Alliance’s CEO, knows how critical this is. “We feel that community and socialization is a key component of health and brain health,” she explained. “To be a member of a community, you have to be vulnerable. But to be vulnerable, you need psychological safety.” In other words, community nourishes and fortifies us, but you can’t let your guard down and reap its rewards if you’re worried about being outed. Especially for people with YOPD, Andrea explains, “You still often have your financial future, your children’s college future, your legacy up in the air.” These are high stakes matters.
“Exactly,” Anna said, underscoring Andrea’s point. “That feeling of being in a safe space is really important. Otherwise, you’re not going to join. I went ten years without meeting anyone with the disease. How much better could it have been for me if I had community? By providing safety, we’re bringing people to the table faster and earlier.”
Your diagnosis is your story. You deserve to share it if, when, and how you want. No matter where you are on this journey, we’re ready to meet you where you are.
Long before PMD Alliance and YOPN joined forces, they recognized the value of each organization. “What captured my attention about YOPN,” Andrea explained, “was the ‘for us, by us’ angle. What they were offering wasn’t prescriptive; it wasn’t someone external telling people how to navigate their diagnosis and their disease. It was coming from people who were living it themselves”—for YOPD, by YOPD. “That’s so aligned with PMD Alliance’s culture and values. I always felt, wow, they just get it.”
Anna, too, was impressed with PMD Alliance and its holistic emphasis. “It was important to me to seek out a partner who embraced my vision for the future of YOPN,” she said. “We worked hard to build a safe, supportive, and vibrant community for those with YOPD. From the beginning, we’ve listened to the needs and interests of those living with the disease, and created an energetic vibe that reflects their youth and spirit, and inspires them to thrive beyond their diagnosis. With YOPN, people can connect and share, while knowing they’re in a safe place in a safe community.”
This joining of forces offers both organizations a missing piece, bringing them into a wholeness that will serve the full spectrum of individual needs across the Ecosystem© of Parkinson’s and movement disorders. “It feels like 1+1 =3,” Anna said, describing the amplified power of this partnership. As Andrea said, “This is such a win for all of us”—for PMD Alliance, for YOPN, and most importantly, for the YOPD community.
“We have long been aware of the unique needs of the young onset community,” Andrea said. “And at PMD Alliance, we want to meet people where they are, to listen and ask rather than tell them, This is what we offer. Rather than shoving a square peg in a round hole. We’ve long been aware that their needs are different, that a lot of them are still working, that they have different schedules and need webinar options in the evenings after work, not during the day. With the infrastructure and programs that we had, it didn’t serve those needs.” By joining with YOPN, PMD Alliance can finally make sure that everyone has a space within our community.
This joining of forces also provides lifelong support for people living or loving someone with YOPD. “Once you’re diagnosed with YOPD, we always consider you early onset. But at some point in your journey,” Anna said, “what we’re talking about”—with dating and parenting and navigating a career—“will be less relevant. PMD Alliance will be able to provide additional resources—a full path.” PMD Alliance will be there when you’re ready to learn not just about the unique needs of young people with Parkinson’s, but financial assistance programs, deep dives into treatment options, advanced care planning, and more. We also have an extensive on-demand video library for care partners and, if you’re looking to engage with your community and start your own support group or gathering, we have a robust training program to empower you.
Since its inception, YOPN has been committed to helping people navigate their disease and thrive today. This means offering fitness and nutrition programs, educational workshops, mind-body tools, and connection. Because, for Anna, supporting people with YOPD in living full, joyful lives has not just been a nonprofit motto; it’s personal. “This is a very complex disease,” she said, “and I’m not willing to wait for a cure to be happy. I’m focused on being well today. If you’re not, you’re going to miss out on life.” Anna has always believed that research and finding a cure is vital, but when she started YOPN, she wasn’t sure she could impact research in the way she can impact lives today. “I’m just trying to make the most of what I have to give while I can.”
This sense of living well right now is at the heart of PMD Alliance’s mission, too. There’s a beloved support group leader, Cindy Bittker, and she has a mantra: “Until there’s a cure, there’s community.” This is a pillar of PMD Alliance’s work. “Yes, let’s find a cure,” Andrea said. “I’m so glad there are researchers toiling away. But until they do, there are a lot of people who need help right now. It can be both and. I’m not a Ph.D. researcher; instead of passively waiting for the scientists to figure it out, what can I do? What can we do right now?”
By coming together, PMD Alliance and YOPN have made a commitment to the YOPD community: together, we will continue forging a path for everyone living with the disease, including those who get the words—You have Parkinson’s—at the most unexpected stage of life.
We will listen to your stories and what you most need and wish for. We will see you and seek to meet you where you are.
And though your life may not look like what you imagined, it is still yours—a precious gift. We will walk alongside you, doing everything in our power to help you thrive.
In joining forces, we hope the YOPD community will flourish—not tomorrow; today.
