Dear friends and family,

Thank you for visiting our fundraising page!

It’s once again time to break out the green gator hats!  Go Ali’s Gaitors!

Ali’s Gaitors was created to help raise awareness about Neurofibromatosis Type II (NF2 for short) and to help fund and support NF research. My sister Ali (now 14 years old) was diagnosed with NF2 in June 2007 and has had two brain surgeries thus far. 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 has no surgeries on the immediate horizon and our campaign to raise funds exclusively for NF2 research was 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 in 2009. 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! This year, raising funds for continual NF research is more critical than ever. Not just for Ali’s sake but for all those NF families who are struggling with life-altering decisions on treatment, often when their loved one affected by NF is not yet in their teen years. Fund raising is also imperative during these slow economic times because research labs have less access to research dollars through grants and other avenues so they have to rely on private funding, especially in the case of rare diseases and disorders such as Neurofibromatosis.

This is where YOU come in! Join Ali's Gaitors as we participate in Great Steps for NF walks again this year: June 4, 2011 at Naperville's Riverwalk.  This year, we also will be sponsoring a new Candlelight Bowl/Bean Bag Tourney Fundraiser on May 14, 2011 at Oak Forest Bowl (15240 S. Cicero, Oak Forest; Call Erica for more details). We dedicate our involvement in these fundraising efforts to Ali but we also walk as a tribute to our many 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 joining Ali’s Gaitors at any of these events and 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.pdf. Fill it out and be sure to include “Didier Family/Ali’s Gaitors” as the Participant/Family Name and “16” as the Participant Number. Then mail in your donation to the NF Midwest address on the form (new location).

Other ways you can support our efforts:

Many thanks for your continued support.

 

Erica, John, Lucas, Ashley & Amanda