|"When my son was diagnosed with NF1 it was a huge relief to be able rely on NF, Inc. |
to help me get through the fear, sorrow and confusion I felt with this diagnosis".
-- Sherry Comes, President & Founder CoffeeCakes.com
|CoffeeCakes.com joins NF, Inc. and Gillian Anderson to Benefit Those Affected by NF|
In 2005, when the Founder and President of our company's son was diagnosed with Neurofibromatosis, we formed a mutually beneficial charitable partnership with Neurofibromatosis, Inc. (NF, Inc.) and Gillian Anderson. A percentage of all of CoffeeCakes.com proceeds are donated to this charitable organization, whose mission is to create a community of support for those affected by NF, through education, advocacy, coalitions, and supporting research for treatments and a cure. We are very proud of the work NF, Inc. is doing and are very happy to be a part of this wonderful charitable organization. We are also excited about our partnership with Gillian Anderson, who has already done so much to help those affected by NF.
Join CoffeeCakes.com, NF Inc. and Gillian Anderson
(Agent Dana Scully from the X-Files, Lady Dedlock in Bleak House and Dr. Sara Zach in The Last King of Scotland)
to help those affected by NF
A Big Word!
Lots of syllables! Lots of problems!
Thank you for your support in the
Fight against NF!
Walk with Sebastian in Support of NF
Sunday September 9th, 2012
2012 Denver NF Walk Sebastian's Fundraising Page
Please help us raise money for the Children's Tumor Foundation and for those affected by NF. If you are in the Denver area we would love it if you would join "Team Sebastion" on this NF Walk in support of Sebastian and everyone affected by NF. Just use the above fundraising link to donate.
Sebastian has NF and will be walking this with us and he is VERY excited! The website is secure, fast and easy to use. At the website you will be able to choose an amount to donate and you will receive email confirmation of your donation. We realize many people cannot donate in this economy but if you are in the Denver area please consider joining Sebastian for this very important cause near and dear to our hearts! Thanks in advance for your help.
Every Step Makes a Difference!
What is NF?
Neurofibromatosis (NF) involves the uncontrolled growth of tumors along the nervous system, which can result in terrible disfigurement, deformity, deafness, blindness, brain tumors, cancer and death. It is the most common genetic disorder caused by a single gene. While not all NF patients suffer from the most severe symptoms, all live their lives with the uncertainty of knowing whether they too will be severely affected because NF is a highly variable and progressive disorder.
Did you know?
NF affects more than 100,000 Americans, making it more prevalent than Cystic Fibrosis, hereditary Muscular Dystrophy, Huntington's Disease and Tay
Sachs combined - though not as well known.
Effects of NF
A brief summary of possible problems from NF include:
Brain tumors Spinal cord tumors Pseudarthrosis or Scoliosis
Headaches Deafness Learning disabilities
Cancer Pain High blood pressure
Seizures Tumors of the optic nerve Deformities and Disfigurement
Blindness Paralysis Hearing Loss Delayed or early puberty Epilepsy Hydrocephalus Bone Deformities
Severe itching Short stature Psychosocial burdens
Please help us in our efforts to educate and raise funds for this very important cause!
Two distinct forms of NF:
NF-1 affects 1 in 3,500 births
NF-1 gene is on chromosome 17
NF-2 affects 1 in 30,000 births
NF-2 gene is on chromosome 22
Affected parents have a 50% chance of passing on NF to each offspring. NF IS NOT contagious, a person is born with it.
No cure exists for neurofibromatosis other than the surgery. Most tumors cannot be totally removed and may grow back.
Check us out on The Official Gillian
Anderson Website and the Neurofibromatosis, Inc.
"I am proud to be a part of this wonderful charitable partnership we have formed in hopes of raising monies to help find a cure for NF, not only for my son but for all of those affected with Neurofibromatosis".
-- Sherry Comes, President & Founder CoffeeCakes.com
NF Links & Resources:
To learn more about Neurofibromatosis (NF):
10 Things Everyone Should Know about Their NF1 by Dr. Douglas R. Steward, MD Clinical Genetics Branch, Division of Cancer Epidemiology and Genetics, National Cancer Research, from the National Institute of Health in Bethesda, Maryland.
10 Things Everyone Should Know about Their NF1
Children's Tumor Foundation Ending Neurofibromatosis Through Research
Children's Tumor Foundation
National Institute of Neurological Disorders
Neurofibromatosis Fact Sheet
Harvard Medical School Center
for Neurofibromatosis and Allied Disorders
NF, Inc. is a national, tax-exempt, charitable organization whose mission is to create a network of support for those affected by NF, through education, advocacy, and coalitions, and by supporting research for treatments and a cure.
Gillian Anderson is NF, Inc.'s Honorary Spokesperson and she's also a Patron of the NFA Neurofibromatosis Association (UK).
The Neurofibromatosis Association (UK)
Just Ask Reggie Bibbs, a place to talk, have fun and share ideas about NF
Reggie Bibbs Web Site!
Recent NF Shows & Specials