Tuesday, April 08, 2014

NF Walk Update and Little Philip Update

We thank you for the sacrifice of your time and resources to support research to fund a cure and treatment for neurofibromatosis (NF).  When we started this medical journey with Little Philip over two years ago, we never expected to be the recipients of so much prayer, so much love, so much support. We are forever changed as a family because of NF but have always been surrounded by your love and for that, we are eternally grateful.

For those that have donated but are unable to be with us on May 10th.  THANK YOU!
As of today, Team Moss has raised $11,040 and currently has 130 members!  Team Moss is comprised of family, friends both near and far, our children's classmates atVestavia West Elementary, former classmates from Trinity Child Development Center, friends from our Mountain Brook Community Church, colleagues and college friends from Birmingham-Southern College, Samford, Vanderbilt, Mississippi State, and neighbors.  In the name of research we've even let in a few Ole Miss Rebels.  Overall, the 1st annual Birmingham NF Walk is just $5000 from meeting its $30,000 goal with one month to go.  Please share our NF story (attached) with your family and friends to help us meet our overall goal and to increase education and understanding of what NF is.  Here is a quick definition:

Neurofibromatosis  (NF)  is a genetic condition that causes tumors to grow throughout the body and can lead to blindness, bone abnormalities, cancer, deafness, disfigurement, and learning disabilities.  

For those that will be joining us in Birmingham for the walk on May 10th:
We recognize that many of you are coming from out of town and have asked for recommendations for nearby hotels.  We recommend  Holiday Inn Birmingham/Homewoodlocated at 492 Wildwood Circle North in Homewood just off of the Lakeshore Drive exit of I-65. This hotel has an indoor pool and kids eat free in their reasonably priced hotel restaurant. There are several chain restaurants and fast food locations within walking distance, along with a Starbucks for those of you who share Renie's affinity for good caffeine.    Additional hotel recommendations that are in that same area, literally just down the same road -  La Quinta Inn and Suites, and Hampton Inn.  

We are working on plans to have a Team Moss celebration party after the walk on Saturday evening for those that are in town and can join us. 

If you would please reply to mossrenie@gmail.com and let us know
1.  When you plan to arrive and where you are staying
2.  If you are in town Saturday, May 10th night.  
3.  Your t-shirt size and sizes for anyone else registered within families. (this is very important!)

Your reply by April 26th will help us  in planning a fun and memorable weekend.  If you have any other questions, please do not hesitate to contact us.

For those that are still considering donating to CTF or joining us to walk on May 10th:
Please donate or register at the web page for Team Moss here.  Be sure to select the "Join Team" button or "donate now" button on the right hand side of the screen.  

How is Little Philip doing?
Just over one month after the NF Walk, Little Philip will endure his sixth MRI in less than three years, requiring general anesthesia due to the location of the tumor in his neck.  After four separate specialists appointments and a thorough review of his case in the past few months, his medical team has not been able to agree on a chemotherapy drug that would halt the growth of this particular type of tumor.  As a result, the tumor is slowly encroaching on his airway.  We know there are many worthwhile charities to support but please understand that NF is a a tough contender to receive attention from the "big dogs" at American Cancer Society and larger non-profits who that have huge overhead administrative costs. Philip's doctors are wholly supportive of our support for Children's Tumor Foundation's strategy (financial report here ) due to the low administrative costs, and significant funding directly from the Children's Tumor Foundation for clinical trials that one day, may offer hope for our son.   Here in Birmingham, our doctor, Bruce Korf,  literally wrote the book on Neurofibromatosis.   

If you do not feel led to respond to this NF Walk, we would welcome the opportunity to discuss one on one with you what the Children's Tumor Foundation does and why we endorse and encourage your support.  We are now the state leaders for the Alabama chapter of Children's Tumor Foundation and are committed to four goals: fundraising, advocacy, patient engagement, and support for newly diagnosed individuals and their families.  
Please forward this email and share our family blog at www.mosshouse.blogspot.com to increase awareness and help us connect with other families affected by NF.  If you have friends that would like to make a donation in the name of Team Moss directly to the Children's Tumor Foundation by mail, I have attached a donation form that can be included with donation.  I have also attached the Team Moss flyer to this email that shares our NF story. 

On behalf of Team Moss, we thank you and look forward to hearing from you soon,
Renie and Philip Moss
View the Moss Family NF video here posted on the UAB Department of Genetics homepage.  

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