For my son, Nolan
Hi Family and Friends –
Today Nolan is asking for your help. Most of you know that Nolan has NF2 (neurofibromatosis type 2), a rare genetic disorder that causes tumor growth. He has lived with this for most of his life, and has recently had terrible pain issues as his NF2 progresses.
He has had 5 surgeries (and is considering 2 more), sees 10+ doctors regularly and takes 16 pills/day for his pain which is severe and debilitating.
NF2 causes a myriad of issues for those afflicted, including partial/full vision and hearing loss, balance issues, facial paralysis, brain/central nervous system tumors, other tumors of all types causing loss of function/mobility, and the list goes on. There is no treatment and no cure for NF2.
Recently we have connected with a new non-profit group called NF2 BioSolutions which is working at jumpstarting a treatment using gene replacement therapy. They are 100% volunteers, all the money donated go toward actions that advance research. I encourage you to visit their website at nf2biosolutions.org and read the NF2 Stories of some amazing people (including Nolan).
The volunteer group coordinating this effort is an impressive collection of experts. We are at a crossroad where critical knowledge and technology have been acquired in changing genes that cause diseases, using harmless viruses to replace the defective gene.
Funding for rare diseases research is scarce, but rare disease foundations have successfully funded gene replacement treatment of their rare diseases and NF2 BioSolutions wants to follow that model. Every donated dollar goes to this effort.
Please help Nolan and others by sending this message far and wide to any and all who might help us reach our goal of awareness and funding for research. Clinical trials are within reach (2-3 years) and Nolan is hoping to be the 1 st patient in clinical trials, praying they will happen soon to alleviate his pain and preserve his hearing.
We are deeply and truly thankful for thoughts, prayers, and money in support of Nolan and others with NF2.