When our daughter was diagnosed two years ago at age 7 with NF2 we decided as parents that we needed to do something to help her and others with NF. We did not want invasive surgeries to be the only treatment, we wanted medications to stop and or shrink growth of tumors before surgery would ever be needed.
We decided the best thing we could do for her was to raise money for research in these areas. We raised $55,000 our first year and $42,000 last year. For us it gives us something positive to focus on during stressful times and the feeling doing something when there is nothing else to do. As our friends and co-workers found out about Leah’s condition and prognosis they all wanted to do something to help. Fundraising gave them the vehicle to extend their love and willingness to help. Our family, friends and community have given and continue to give their time and money for Leah and everyone with NF2.
Direct YOUR Money
It is sometimes easy to say we should do a fundraiser, but the question that must accompany that is; where will our hard earned money go? As we learned more about NF2 we were disappointed in the lack of research being done and it became evident that there was a need for more. As research is slowly starting to increase maintaining interest in NF2 based research and sparking new interest and ideas is also important.
Many NF2 families and patients have raised money with the hopes of finding a treatment or cure for NF2. The problem is that many people fundraised through organizations and may have had no idea where their hard earned money went.
The first question we asked when choosing an organization to work with was, Where will the money go to? and Do we have a say in where it goes? These are questions that you should be asking when you work with an organization. We have been able to direct our money in two areas. We have sponsored two private research studies at Harvard Medical School / MGH’s Center for Neurofibromatosis and Center for Neurofibromatosis and Allied Disorders (CNfAD), as well as donated a portion of our money to an NF advocacy group.
Advocacy is an area that many NF2 patients and families are unfamiliar with and as a result may or may not be interested in participating in. The United States government funds research for NF1, NF2, and Schwannomatosis through the Neurofibromatosis Research Program (NFRP) at Congressionally Directed Medical Research Programs (CDMRP), and through the National Institutes of Health (NIH).
These two agencies currently fund millions of dollars toward research. We need to advocate for not only the continuation of this funding, but the increasing of it, specifically in the area of NF2. Consider donating or directing your fundraising efforts to advocacy. Thousands of dollars can turn into millions of dollars. You may also consider writing or emailing your congressman to support NF2 research funding. Money could also be directed to assisting in the cost of sending someone to Washington, DC in person and advocate on NF’s behalf.
In conclusion, we have learned a lot in our short 2 year NF2 journey and know more is yet to come. We are more than willing to share some of what we have learned along the way. For those just beginning or already in it these are just some ideas to consider if fundraising is in your future. For any questions please feel free to contact us at firstname.lastname@example.org, or check out our blog and fundraising page at: www.leahmanth.com.