We’re proud to support Neurofibromatosis Midwest.
Who Are NF Midwest
What’s the Connection: Our son, Anders, has two rare diseases, Becker Muscular Dystrophy (BMD) and Neurofibromatosis Type 2 (NF2). Both BMD and NF2 are considered orphan diseases, rare illnesses that affect less than 200,000 Americans (BMD affects approx. 1 in 30,000 males; NF2 affects approx. 1 in 25,000 people. Impossible to believe, right?). Treatments for orphan diseases are not considered profitable due to the disparity between the costs involved in developing them and the limited number of patients to whom they can be sold. NF Midwest has been supporting us since the day our son was diagnosed, even before we knew the organization existed. At our first appointment, we received educational and support information from them. Since then, NF Midwest has shared with or connected us to opportunities for everything from clinical trials and conferences to camp, get-togethers, and other events. NF Midwest is not just an organization. They are our people, and they are changing lives.
What is NF2
If I say “tumor,” you think “cancer.” But if I add the word “benign,” you think “harmless.” If only that were true! NF2 is a non-cancerous tumor disorder of the nervous system due to a lack of a protein called Merlin (sadly, not of the good and magical variety). Tumors are predominantly located around the brain and spine but can grow anywhere in the body where there are nerves. The most common tumors associated with NF2 are vestibular schwannomas, which grow on the auditory nerves. They form between the middle ear and the brain stem and can cause tinnitus, balance problems, and hearing loss or deafness. Nerve sheath tumors in other parts of the body can cause changes in vision, blindness, oculomotor nerve palsy, migraine, numbness or weakness in the arms or legs, and fluid buildup in the brain. Anders’ symptoms, including processing speed declines, have precluded him from attending high school with his peers and have forestalled his future plans while we deal with the present reality. Any treatment considered depends upon a tumor’s location and the symptoms it is creating. Surgical removal of schwannomas can be a treatment option, but they tend to grow back like a once-overgrown raspberry bramble that returns from the small piece of plant left behind. Radiation treatment or chemotherapy can also be an option, but it does not usually have the effect of shrinking tumors, it merely arrests their growth.
Why NF Midwest
Because NF Midwest C.A.R.E.S. The tenets of NF Midwest are to improve the lives of children, adults, and families impacted by neurofibromatosis through Clinics, Awareness, Research, Education and Support, all of which they’ve been doing for 41 years. NF Midwest works to educate, comfort, improve clinical care, and fund research for treatments and a cure for these very complicated, variable disorders that require many different types of specialists. They fund advocacy efforts to increase federal spending on NF research, they directly fund research projects, and they support clinical trials. For decades, the NF community has believed researchers to be on the cusp of new treatments. Well, thanks to the efforts of NF Midwest, we are very nearly there.
Please join us in our efforts to help NF Midwest make the dream of new NF treatments a reality, today.