Shannon's Fundraiser

My good friend of 7 years, Shannon, who like myself has Neurofibromatosis Type II (NF2), is entering hospice due to the multitude of intractable issues arising from her NF2 tumors. I thank God for her friendship as she invited me to visit RIT, where I both graduated and met my husband. We also thank God that I am among the most highly functional NF2-ers and that I and my husband are able to run road races, marathons and triathlons as fundraisers for medical research to find a cure for NF. You may donate here https://www.youcaring.com/ShannonWachal to help with hospice care, funeral expenses, and caring for their daughter, Abigail. (Or you may donate here 100% of contributions go to the Children's Tumor Foundation for medical research. http://hopecur.com/AnneNoble) Help Shannon be the healthy mommy, she dreams of being!

Beneficiary: Shannon and Charles Wachal

Undies in the SNOW, to find a cure!!!

You know what sucks? Pants. 

You know what also sucks? Neurofibromatosis. 

Let's get rid of them both this February! 

Donate here: www.hopecur.com/AnneNoble 

On Valentine’s Day we will be running to raise funds for medical research on Neurofibromatosis. That is the condition that, in its most visible form, was seen when Pope Francis recently was photographed embracing a man covered with hundreds of tumors.

Most Neurofibromatosis tumors are on the inside and thus are less visible.  We will be stripping to our skivvies and running around in the frigid temps, all in an effort to raise funds for medical research to benefit thousands of kids like Jack Burke.

Jack is the kind of kid that immediately becomes your best friend - such a character, a great big brother and just happy as can be. But Jack's journey is a tough one. He was diagnosed with NF (Neurofibromatosis) at two-years-old and, along with other tumors, he has a plexiform neurofibroma (a complex tumor) just behind his left eye. And now, just this September, they discovered a new tumor on his brain stem that needs immediate intervention. So, as you are reading this, he will have started 15 months of chemotherapy. An 8-year-old going through chemo!

NO CHILD SHOULD HAVE TO GO THROUGH THIS, so we are running in our undies in the freezing cold because we will do whatever it takes, no matter how ridiculous, to help find a cure for NF!

We pray that through this we can touch others and show them the love of God. Others who have been affected from NF have already shown us that you can live fully and with joy no matter what you look like on the outside. Currently, there is no cure for NF2, though promising medical trials are underway. With your donations, we can change that.  

 I (Anne) was diagnosed with Neurofibromatosis Type 2 at the age of seven. I have undergone numerous surgeries. Although I become deaf, I consider myself to be blessed with a milder case. I know many people who also have the disorder and who are not able to run or ride a bike due to physical impairments. I am also blessed to have a very good Auditory Brainstem Implant and after much practice I can have conversations and am even able to talk some on the phone again! We got married in June 2013 and are enjoying newlywed life! We also do triathlons (in full clothing), for the same cause, once it gets warmer!

In 2012, we raised over $10,000 for CTF. Your donation, whether it be $5 or $500, will provide critical funding to the Children's Tumor Foundation and allow for clinical trials, treatments and ultimately the cure we desperately need. It would be awful for this economic turndown to interfere with Jack’s health, or the research needed to find a cure for the thousands of others like him. A dollar per a mile [in a marathon] would be $26.20. $10 per a mile would be $262.00.

We sincerely thank you, Jack thanks you, and the millions of families who will benefit from this effort thank you.

100% of donations go directly to the Children's Tumor Foundation.

Donating online using either of our below links is easy, safe and secure.

CTF is a 501(c)(3) non-profit organization rated 4-stars by Charity Navigator and priding itself on spending 82.4% of its revenue on program expenses and less than 8% on administrative costs.

Sincerely,

 Anne and Steve Noble

http://hopecur.com/AnneNoble  and  http://hopecur.com/SteveNoble

If you prefer to send a check, you may send it to:
The Children's Tumor Foundation                                                                             

95 Pine Street, 16th Floor                                                                                          

New York, NY 10269-0711                                                                           

Please put the following on the memo line: A. / S. Noble – Cupid’s 2014  

____________________________________________________________________________

If you are interested in contributing to this blog, which I began as a multi-author college literacy project, about "going many miles for NF," please contact me.  

2013 Recap... WEDDING!

Well, I've not been able to post into this blog for quite a while, because I just hadn't gotten around to contacting my Alma Mater, RIT, which this account is connected to, regarding my loss of ability to log in!

My last post was at the end of 2012, but I'd like to keep this blog project alive and going, even if the posts seem rather scattered.... and of course related to the original topic - Neurofibromatosis... although that might include a few interruptions, occasionally. 

What happened in 2013? Well, I married my best friend!!! It was a beautiful June day, on top of a hill overlooking farmland, in central NY! Yep, I think that is pretty much all that happened!!! Oh, and we moved to the beautiful state of NH!

I'll write another post, soon... but I couldn't leave this out! (apologies for the lack of NF connection for this post... but the flowers are CTF colours... and my favourite colours!)

My Story: Video!

I’m Anne Shigley and I’ve lived with NF2 for 18 years.

After a hearing test in first grade in Atlanta, GA, I had an MRI that led to NF2 diagnosis.

The summer after 2^nd grade, in the middle of the Atlanta Olympic Games,

I came down to breakfast one Saturday with the right side of my face paralyzed by an NF tumor.

Within a couple of weeks, my parents flew me to Los Angeles where Dr. Brackmann at House Ear Clinic took out the tumor.

I woke up grinning from ear to ear… and asking for a hotdog, but deaf on the right side.

Through the rest of my childhood, NF was an issue because I heard only on one side and had to have MRI’s every year.

But otherwise, I was just a kid going to school, enjoying Girl Scouts, babysitting, art, and then cross country, swimming and track teams in high school.

Going into my senior year, my doctor in Atlanta said the tumors in my left auditory canal and on my spinal cord, which he had been watching for years, had grown.

On a visit to the Harvard NF Clinic in Boston, Dr. MacCollin told me that someday I would be deaf, though probably not right away. I said, yeah, maybe when I’m 80.

On the flight home, I cried silently the whole way.

Six weeks later, the day my parents and I were flying back to Boston for spinal cord surgery, my hearing faded out. My parents and the nurses had to write on white boards to communicate with me.

As soon as they let me travel, I flew to LA for another surgery at House Ear to decompress the tumor, but it did not restore hearing.

I finished high school with a captionist sitting beside me.

Going deaf at 18 was hugely traumatic.

I can understand why some people would give up on life.

The next fall, I entered Maryville College in TN, and was happy to be on the cross country team. Maryville was great but I realized I needed more to learn to live with my hearing loss.

That spring, I took a medical withdrawal and got an Auditory Brainstem Implant at House Ear, spent the summer at Gallaudet in Washington, DC, for a crash course in sign language, and in the fall transferred to Rochester Institute of Technology for the National Technical Institute for the Deaf.

RIT, where I graduated last spring, was great for me, mainly because of two people:

Catherine Clark is RIT’s audiologist who works with all the students who have cochlear or auditory brainstem implants. With her help, I can now understand about 90% of speech, even though without my bionic ear I am completely deaf.

Now I’m in a masters program in early childhood special ed at Roberts Wesleyan, functioning in a hearing classroom with just minimal support.

The other person is a boy I met on a Campus Crusade spring break trip – Steve Noble, my fiancé. We will be married next June. Steve is totally supportive, doing triathlons and swim races for CTF, as well as this marathon…. Even though he equates running with pain and misery!

And my parents back home in Atlanta have been very supportive every step of the way. They couldn’t be here this weekend, but dad did a half marathon this morning in Savannah and helped raise funds from a lot of his friends.

When I see all the lives that have been ravished or cut short by NF, I realize that I am very fortunate, blessed to be a blessing to those who have been less fortunate with NF.

Thank you all for your support for CTF. Together we will help find a cure!

The flamingos that flock for a cure!

Okay, this actually started a few weeks ago, but I forgot to ever blog it and I think it is one of the coolest fundraising things I've seen for NF, or any other charity for that matter.

This is Connor (same kid from previous blog as seen here http://www.blogger.com/blogger.g?blogID=2437717822165880323#editor/target=post;postID=10847343610444969)

...and this is the flamingos!

9-year old Connor is a very smart kid, who has the genetic disorder, Neurofibromatosis Type 2 (generally called "NF2" for short.)  This whole Texas family is into this fundraising to help find a cure for NF, and if a person makes a donation of a certain amount, they can get their yard flocked by these cute plastic flamingos!

Thank you to their entire family for giving permission to include Connor in my fundraising efforts! :)

http://ctf.kintera.org/nfenycmarathon2012/anneshigley 

More fundraising ideas: Fundraising

Great ideas from YOU: Contact a restaurant in your local area to see if they will contribute a portion of their sales to your fundraising one night.  Thank individual donors on facebook by tagging them and writing a special message about them. OR ask your company if they will host a Casual Day! Ask your coworkers to contribute to your campaign in return they are able to wear jeans, sneakers or anything casual. Include fundraisng link in all e-mail signatures. Hold a bake sale, garage / yard sale or car wash for a cure! 

Purple toe-nails, blisters, pain and more... all for a CURE!

Yesterday, I woke up at 5:30am to go run my 6th full-marathon. Steve was wise enough to sleep through most of this! Anyways, I carpooled over to the starting line with some people from the running club and Steve picked me up at the end! ;-)

I wore my NF Team shirt, as usual, to promote awareness and help find a cure for NF. (This was not an official NF Team event.) Our conversation was brief, but there was a man who came up behind me around mile 17 or so, who told me that his brother had NF. He recognized my team shirt and said that he should have worn his but had not worn it that day!

Steve and I will be running NYC Marathon in November, and we have yet to reach our fundraising minimum, much less our goal. Please check it out here.... http://ctf.kintera.org/NFEnewyorkcity2012/anneshigley

(Check out our letter here, as posted in previous blog entry:  http://www.blogger.com/blogger.g?blogID=2437717822165880323#editor/target=post;postID=10847343610444969)

Here is a great short video about the NF team:

This was before the beating up our bodies...

This is me at about mile 22 or 23... my slowest marathon, so far, (5:45) but at least I finished...

And this was after the race with the other full-marathoners. I told them they could go home but I think they wanted to get this picture! I was too tired to think to get a picture with Steve... (He took this picture!) ...

Thanks for reading! 

TRI-ing to CURE NF... one stride at a time!

                                                                                                                                                                                                         Fall 2012

Dear  __________YOU___________,

                In this time of economic slow down, everyone is affected in one way or another. My family has decided to spend less on ourselves and to help others who are in need. If you are inclined to do the same, please read on and allow me to ask for your help with a charity that I believe in and trust that is having its own share of financial cut backs.

                The Children Tumor Foundation is spending much time and money to fund medical research and care, towards the goal to find a cure for Neurofibromatosis (NF). This debilitating genetic condition has  no known cure and affects 1:2,500 births. Individuals with NF can have tumors grow on any nerve ending in their bodies, causing deafness, deformities, learning disabilities, blindness and more. People with NF go through many medical procedures, surgeries, and chemotherapy to help them cope with the pain and tumors.

                Running and fundraising for the Children's Tumor Foundation has been important for me, ever since I first joined the NF Endurance Team, in the footsteps of my father who began in 2005.  I ran my first full marathon with the team in 2007. The team is like a family to me!

Our NF Hero is the child of a friend of mine- we are running for him. Connor, is like any other 9-year-old boy.  He loves his pets, using his computer, watching TV and going to Boy Scouts.  In fact, he eventually plans on becoming an Eagle Scout before going to college to study veterinarian medicine. But unlike most other 9-year-old boys, he struggles with a disease called Neurofibromatosis. The first clue that anything was going on was at age 1 it appeared he had a “lazy eye” and was diagnosed with a juvenile cataract in his left eye. Just 6 months later, he had his first surgery. Then, he had an MRI to ensure that there was nothing wrong. Nothing showed up, so he was diagnosed with psuedotumor cerebri – That is, his body was acting as if it had brain tumors.           

As a result, Connor had to have several spinal taps at a very young age. When he was 4, an MRI showed a meningioma. He had brain surgery to remove this tumor, and it was fortunately found to be benign, then the diagnosis of Neurofibromatosis type 2 was made. Soon after, he began showing signs of facial paralysis on his right side, resulting in three more surgeries between the age of 5 and 7. Because these tumors are on the brain and spinal cord, it is impossible to remove them completely, and they grow back. The tumor that was causing facial paralysis on his right side also affected his ear bones , and he lost his hearing and soon after his eyesight, on that side. He endured excruciating pain because of the pressure of the tumor on his eye socket.

Finally, his family had to make the difficult decision to remove his right eye. The tumor remains intact, though, so he can’t have a prosthetic eye. Unfortunately, it can’t be removed- it encompasses his carotid arteries. He has a tumor on his left side that is being closely watched, as well as tumors on both auditory nerves, which is the hallmark of NF2, usually causing deafness.

Connor is an extremely smart kid, but needs support for seeing and hearing, in school. He continues to be strong and not let this debilitating disorder bring him down. We pray that through this we can touch others and show them the love of God. Others who have been disfigured from NF have already shown us that you can live fully & with joy no matter what you look like on the outside. Currently, there is no cure for NF2, though promising medical trials are underway. With your donations, we can change that.    

                As you may know, I have NF also. I was diagnosed with Neurofibromatosis Type 2 at the age of seven. I have undergone numerous surgeries. Although I become deaf, I consider myself to be blessed with a milder case. I know many people who also have the disorder and who are not able to run or ride a bike, due to physical impairments. I am also blessed to have a very good Auditory Brainstem Implant and after much practice I can have conversations and am even able to talk some on the phone again!

                Regardless of having NF2, I'm also the luckiest woman in the world, because I'm engaged to Mr. Steve Noble! We met in 2009, through RIT's (Rochester Institute of Technology) Campus Crusade for Christ Spring Break trip. He proposed to me last summer at the finish line of my first triathlon, which was of Olympic distance. Despite that I have no functional balance nerves, we went on to both complete a 70.3 Ironman Triathlon, a couple months later. We plan to marry in June of 2013. I can hardly wait!! :-)

                For my third time and his first, we will be running in the New York City Marathon, to help raise funds for CTF.  Two years ago, I raised over $10,000 for the foundation. Can we do it again? A donation of any size is very MUCH appreciated. It would be awful for this economic turndown to interfere with the research needed to find a cure for Connor and the thousands of others like him.

                To learn more about CTF or NF please visit www.CTF.org. To give to CTF, Kintera.com is safe, easy and secure. Your donation will help to find a cure come sooner - rather than later as 80 percent of the donations go directly to research. CTF is ranked a 4-star non-profit by Charity Navigator.

Sincerely,

Anne Shigley and Steve Noble

LINK: http://ctf.kintera.org/NFEnycmarathon2012/anneshigley

P.S. You can also send a check to:

The Children's Tumor Foundation

95 Pine Street, 16th Floor

New York, NY 10269-0711

Please put the following on the memo line: Shigley / Noble – NYC 2012