My name is Sally Richards, and I have Neurofibromatosis 2 (NF2). This is a genetic disorder in which tumors form on the nerves of the brain and spine (the central nervous system). I've lived with the uncertainties of NF2 for 25 years. Early after diagnosis, my challenges seemed insurmountable, but they proved to be stepping stones to a stronger future. I went from a shy, quiet individual to an articulate, outspoken professional.
I've decided to look at the challenges of NF2 as I would if NF2 were a business and I the CEO. I research and plan and strategize to ensure I make informed, well thought out decisions, rather than letting my heart or my emotions lead me. How do I do this? I work with wonderful organizations propelling action and accumulating resources towards the betterment of NF. The organizations I team with are:
and the multi-disciplinary team of NF2 experts at Northwestern Memorial Hospital where Dr. Andrew Fishman is the central contact.
Here is a link to Dr. Fishman's page at NMH:
The benefits of working with these organizations is two-fold: 1) I'm able to partner with individuals who work tirelessly to achieve a better life for those with NF and, 2) it's life sustaining, guiding me and strengthening my journey through life.
Northwestern Memorial neurosurgeons Drs. Andrew Fishman and Bernard Bendok, and me in the middle
Having a supportive group of people to stand with me and fight makes every day, every battle against NF2 a little easier. I am so fortunate to have you all in my life. I would never have met such a compassionate, tenacious and dedicated bunch if we hadn't been affected by NF2 in one way or another. It's the thread that weaves our lives together. In my family, there are four of us with NF2 - my mother, sister, nephew and me. And although we are the ones whose bodies are affected by NF2, my entire family and support system deal with its effects every day. To my family, friends and fellow NF2 comrades, thank you. We're in this together, and I'm so glad to take this journey with you.
left to right starting at top of collage
1) Cousin Andy and I at Great Steps fundraiser for NF Midwest,
2) Four weeks after brain surgery in August 2009 my son and I right before he went away to college,
3) My friend Rick (now deceased from NF2) and I at a Christmas party,
4) After brain surgery in 2004,
5) My friend Val and I in our purple survivor t-shirts at Path to Progress organized by the American Brain Tumor Association fundraiser
6) My friend Helen and I recently
Money for NF
Onto the reason for this fundraising page. I've completed smaller scale 5K races, and I am now seeking a larger scale challenge. My Northwestern Memorial medical team has alleviated the burden of me being the sole strategic planner of my healthcare plan. They're experienced and knowledgeable about NF2, so I now have more personal time and have a new lease on life. I'm raising funds to increase NF2 awareness and to fund research for a cure. This August, I'll speed walk the Rock and Roll 1/2 Marathon in Chicago.
During the race, people will walk with me to help me keep my balance. I love it that my training mirrors my younger years. Earlier sports-filled years have helped me prepare both mentally and physically for the upcoming race. I was a gymnast for ten years, and the intensity and training I learned during those years complement my present training. Each day, I'm at the gym stretching, and I then choose between long distance speed walking, weight training and swimming. Fresh fruit, veggies and healthy meals have replaced all the fast food I used to eat except for the alfredo dip for sandwiches! Of course, my new diet and training schedule doesn't mean I've given up fun. In fact, a few months ago I spent an awesome night in the city with friends as we celebrated our collective 40th birthdays well into the night. If this is the new 40 folks, bring it on!
Where Your Dollars Go
NF Endurance (NFE) is the largest program of the Children’s Tumor Foundation funding NF research. Donations to NFE are restricted for use in the Foundation’s science and research programs. NFE continues its commitment to advancing NF research, now providing close to one-third of the funds to support the annual Foundation research budget. Following last year's record $1.35 million raised, we are pleased to budget for increased levels of funding in 2010.
There is currently no effective drug treatment for NF1 or NF2, and identifying potential drugs for NF clinical trials is no easy matter. The good news is that, in part through research sponsored by the Foundation, the number of drugs in NF clinical trials grew in 2009, particularly due to significant advances in NF2 trials.
In addition to great support from family and friends and fellow NF2 survivors, I've got strong faith in Jesus Christ that helps me every day. I'd like to end with an excerpt from a song by Kirk Carr that I find sums up my faith:
For every mountain, You've brought me over
For every trial, You've seen me through
For ever blessing, Hallelujah
For this I give You praise!
Thanks for reading my story. I hope that I've compelled you to join me in fighting NF and doing whatever we can to make a cure possible.
Sally's P.S. Please make sure your online payment was received the site sometimes does not take. Heads up about donating online. When asked if the transaction is to be confidential, check the box 'yes'," if you want your amount hidden but name shown. You can also donate by adding my team participant ID #, which is CRH-5759-10 and name Sally Richards, in the note line of a check and make the check payable to Children's Tumor Foundation and the address is Children's Tumor Foundation,
95 Pine Street, 16th Floor
New York, NY 10005.