“I never came back from it.” — Donni’s life with ME/CFS

Some of our most devoted supporters know this disease from the inside. Donni is one of them. Meet Donni and hear her story in her own words.

“Nearly twenty years ago, life was full of joy and possibility. After years as an elementary school teacher, I took a leap of faith and opened my own private kindergarten. Those years were some of the happiest of my life—spending my days doing what I loved, nurturing young minds, and living out a passion I had carried for years.

Four years into what had become a thriving and deeply fulfilling school, everything changed.

I caught the H1N1 flu—the one year I had missed my flu shot. I assumed I would recover like anyone else. Instead, I never came back from it.

Somehow, I crawled through the next six months just to finish the school year. By the end, I had no choice but to retire far earlier than I ever imagined. What followed was ten months completely bedridden. Slowly, I climbed a little higher from that place—but “climbing” is generous. Today I live in the high moderate to low severe range of ME/CFS. I am housebound and spend 60–70% of my time in bed.

Like millions of people living with ME/CFS and Long COVID, I know what it means to have a life interrupted by a disease that few people truly understand.

But I have also learned that even when illness takes so much, it cannot take away the desire to help others.

In "Beyond the Glass," Donni is reclined in an armchair, wrapped in a yellow blanket, facing a large window. Outside, life goes on — lush, bright, and just out of reach.Art became one of the ways I could still express myself. I began painting a series of works to give voice to the suffering so many of us experience in silence. Through these paintings, I hope others might see what this illness feels like and understand why research and recognition are so urgently needed.

That’s why I support Open Medicine Foundation (OMF). I trust their work, their scientists, and their commitment to finding real answers. I believe they are helping lead the way toward meaningful treatments and, one day, a cure.

Each of us may have different abilities, but we can all be part of the progress. Becoming a monthly donor—even a small one—helps sustain the research that patients urgently need. Or start a personal fundraiser for OMF which can bring others into the mission and help shine a light on this often unseen disease.

Together, we can help turn stories like mine into stories of recovery and hope.”

~Donni

Hope Builders logo

Donni chose to be part of OMF’s mission — because she believes this disease deserves real answers. 

 

We’re in the final stretch! With only 8 days left in our March challenge, we’re calling on 7 more incredible supporters to become OMF Hope Builders—our dedicated monthly donors.

 

Their recurring support is what keeps our research moving forward without interruption. Joining is simple. Your impact is real. And you can modify, adjust, pause, or cancel anytime.

👉 Join OMF’s Hope Builders

Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS) Post Treatment Lyme Disease Syndrome (PTLDS), Fibromyalgia Leading Research. Delivering Hope.Open Medicine Foundation®

What are the advantages of giving from your Donor Advised Fund (DAF)?

  • Your gifts to your donor advised fund entitle you to an immediate income tax deduction at the time of contribution.
  • You avoid capital gains tax on appreciated assets you place in your donor advised fund.
  • Your fund’s investment gains accumulate tax free.
  • Funds are distributed to Open Medicine Foundation in your name and immediately put to use to support our worldwide research efforts.


How do I make a donation through my DAF?

Just click on the DAF widget below. It is simple and convenient to find your fund among the over 900 funds in our system.

Still can’t find your fund? 

  • Request a grant distribution through your Donor Advised Fund sponsor
  • Be sure to use OMF’s EIN #26-4712664
  • You can also designate OMF as a beneficiary for your Donor Advised Fund
  • Questions? Give us a call at 650-242-8669