Close this search box.

Amie’s #MayMomentum story

Spreading Hope One Bear at a Time

I have had ME / CFS since I was 16 years old, after having a bad case of the flu. I am now 28. It took me 10 years of searching to finally find a diagnosis.

Overtime my illness has progressively gotten worse. I went from being a healthy teenager to being so weak I had to use a wheelchair. I have been mostly bedridden for a little over two years. Along with ME / CFS I also have several common co-morbid conditions; Ehlers Danlos, POTS, and Fibromyalgia.

After I became bedridden, I started knitting as a way to pass the time. I came up with the idea to start knitting teddy bears and sending them to others like me. I understand how truly lonely and isolating this illness can be and I wanted to use my time to do something that might bring someone comfort and happiness. I make each bear with the hope that it will give someone a friend to hug when they are in pain or feel alone, and as a reminder that no matter how lonely we may feel, there are so many of us out there. We are never truly alone.

I also wanted to use the bears I make to help spread awareness for ME / CFS and to raise money for research. That is when I learned about OMF. When I give someone a bear, I always encourage a donation to OMF if the person is able, even if it is only a dollar. Of course, I am still happy to make a bear for someone even if they cannot donate.

I also have quite a long list of requests for bears at the moment. I will still happily accept requests to be put on my waiting list, but I cannot predict how long it will take me to get through my current list due to my current health.

As part of team OMF, I feel it is important to spread as much knowledge and awareness for ME / CFS as I can. I make sure to educate any healthcare professional I see about ME / CFS. After having so many doctors dismiss my illness and tell me “it’s all in my head” I hope that by spreading my story and information about ME / CFS that I will help someone to receive a diagnosis sooner. I also want to fight the stigma that ME / CFS is just being “tired.” I also hope that spreading awareness will lead to more interest and funding for research leading to discoveries and hopefully a cure.

The main things that give me hope are the hard-working individuals at OMF and the support of the online community of patients and their family members. I truly believe OMF will find the answers and treatments that we so desperately need.

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