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Sometimes we receive a letter that we want to share. The letter may be from a patient asking a question we feel many people could benefit by seeing the answer. This time, it is from a daughter. While only 14, Emma has worked for two years to try to help find a cure for her mother. Fibromyalgia Awareness Day on May 12 is followed by Mothers’ Day on May 13. It is important for fibromyalgia patients to remember that they are loved and supported by their friends and families, even on their most frustrating days. It is also important to remember that even small steps made by a single person can have a big impact.
Here's Emma's letter-
My name is Emma Z. I am 14 years old, and my mom has Fibromyalgia. She’s had it for almost 10 years now, and I never really understood what it was until just recently. When I was little, I always knew that Mom sometimes didn’t feel good, and that I wasn’t allowed to be wiggly on the couch because it hurt her. It wasn’t until only a few years ago that I learned what a big impact FMS can have on a person’s life, and how little there is that can be done about it.
One night, sometime late in June of 2005, I suddenly realized that I could help. It was like this amazing epiphany! There may as well have been angels in my room singing, a bright golden light shining from the heavens onto my face, and a deep voice from above saying “Emma, you can have a fundraiser.” So anyway, the next morning, I made the prototype of what I would sell: a lanyard (you know, those keychains you make at summer camp out of plastic string?) of a fibromyalgia ribbon. I decided to sell each one for a dollar. I made and sold 77 of these little FMS keychains, and I ended up raising $275 for the cause!
I did some research, and the NFRA seemed to be the only organization that would be willing to spend 100% of my funds on research. I raised this money to help find a cure, so I was focused on making sure that’s exactly what it funded. Each ribbon I sold came with a little explanation, and a link to the NFRA homepage.
I know that the research on FMS is expensive and difficult, and I just wanted to contribute what I could so that we can cure my mom and everyone else with FMS as soon as possible. Thank you for your time and effort toward this worthy cause.
Sincerely,
Emma Z.
You too can make a difference in your own life, the life of your loved ones and those in your community who are struggling with fibromyalgia. Make a donation for research or consider coordinating a fund raiser for fibromyalgia. Contact us at nfra@firstpac.com to begin a discussion of how you can help. This year, NFRA has taken on the challenge of funding a study for $225,000. Over the last 15 years, NFRA has invested almost $400,000 in research, most of our participation has been at the seed level of $10-30,000. It is a huge challenge for us to try to fund an entire study. However, we feel the proposed Positional Cervical Myelopathy study is so important, it is worth the effort.
Join us by making a donation today, or contact us about how you can plan a fund raiser in your community.
