This is for you, Abigail...

My beautiful friend, Shannon, had Neurofibromatosis Type 2 (NF2), a baby girl and loving husband. 1987 - 2014 She is dancing and singing again, with The Lord. Support her husband and baby girl. Donations may also be mailed to the following address, payable to Charles Wachal Charles Wachal 6053 Slocum Rd Ontario, NY 14519 February 14, 2014 - It is with great relief to announce the ending of Shannon's battle with neurofibromatosis Type 2. Shannon went home today [February 14, 2014] surrounded by her wonderful family and some close friends. Shannon now has a new body without any tumors, pain, or discouragement. She died peacefully in her sleep. Shannon wants us all to have the courage to continue without her and wants us to know that she is enjoying her life now. Please continue to pray for my family and friends as we mourn the loss of our wonderful loved ones. Please stay tuned for funeral arrangements as they will be announced sometime next week. R.I.P., Shannon Drummond Wachal, 1987-2014. My daughter Anne's dear friend and confidant since 2007 in the sorority of young women with neurofibromatosis type II (NF2). She invited Anne to visit RIT, where Anne transferred, earned her undergraduate degree and met her husband. Whenever we visited Anne in Rochester, Shannon was at the dinner table. She leaves a grieving husband, Charles Wachal, infant daughter, Abigail, parents and siblings. Shannon had enormous faith in the face of great adversity. As that courageous and loving heart beat its last and heaven's morning broke, I like to think that flights of angels sang her to her rest and that all the trumpets sounded on the other side. Let those of us who remain rededicate ourselves to supporting the search for a cure for NF.

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!)