Dear friends and family,
Thank you for visiting our fundraising page!
Take a BITE out of NF2!!
What a difference a year makes!
When we last posted our fundraising page, our daughter Ali, diagnosed in June 2007 with Neurofibromatosis Type 2 (NF2), was preparing for her second brain surgery in as many years. On Jan. 29, 2008, Ali underwent surgery to remove a tumor from her right ear. While the facial and auditory nerve were left intact, she still lost the hearing in that ear. Then, on July 23, 2009, she had a large tumor removed from behind the bridge of her nose, followed by extensive reconstruction of her orbital bone and the roof of her sinuses. Currently, she has a tumor in her left ear (threatening total deafness) and three other tumors in her brain as well as a multitude of spinal tumors. Every MRI brings the threat of tumor growth or new tumor development.
Where do all these tumors come from?? NF2 is a rare neurological disorder that causes tumors to grow due to the lack of a protein that suppresses tumor growth. Though they are benign, people with NF2 can develop these tumors in the brain, spinal cord and throughout the body. As the tumors grow and press on the nerves, it can lead to deafness, balance issues, vision impairment, seizures, paralysis and sometimes life-threatening conditions. Currently, the only treatment for children with NF2 is surgical removal which poses great risk, so we need to find a cure for NF2!
Thankfully, Ali fully recovered from her latest surgery and no surgeries are on the immediate horizon. Our campaign to raise funds exclusively for NF2 research was also very successful last year (thanks to all of YOUR generosity), as we were able to make a sizeable grant to a research lab doing promising work on potential drug therapies for the nasty type of tumor that Ali had removed last summer. But we cannot rest on our laurels!! While there is some research being done today specifically for NF2, there needs to be lots more so that we can wipe this disease out during Ali’s lifetime! Inaction is NOT an option so we are resolved to do all we can to raise awareness and therefore funds for NF2 research.
And so…..our team, Ali's Gaitors, will participate in
both Great Steps for NF walks again this year: June 5, 2010 at Naperville's Riverwalk and June 19, 2010 at Effingham's Community Park. We dedicate our involvement in these fundraising efforts to Ali but we also walk as a tribute to our many new friends in the NF2 community and in memory of those we have lost to the disease (including several last year). Please honor all of them by contributing to NF research NOW to stop tumor growth from destroying more lives.
Donating online is simple, fast and totally secure. It is also the most efficient way to support our fundraising efforts. However, if you would rather donate offline, please go to this webpage and print out a donor form
http://nfmidwest.org/files/Donor_Form_3_up2.pdf. Fill it out and be sure to include “Didier Family/Ali’s Gaitors” as the Participant/Family or Team Name and “16” as the Team Number. Then mail in your donation to the NF Inc. Midwest address on the form.
Other ways you can support our efforts:
- Gather a group of friends and come out and join us for either walk. You won’t regret it! Great Steps makes for a wonderful fun-filled day! (Details are here http://nfmidwest.org/Great_Steps.html)
- If you have any items you are willing to donate that would make a great raffle prize (or part of a themed basket), please contact Laura directly!
- Forward this to anyone who you think might want to donate too!
Many thanks for your continued support. May God bless you for your generosity!
The Didier Family: Mark, Laura, Sam and Ali