Thank you so much for visiting my donation page!
Perhaps you or someone you know has been touched by one of these disorders?
NF 1, NF 2, and Schwannomatosis are disorders that cause multiple, often-painful tumors to grow on cranial, spinal, and peripheral nerves. Children of all ages can be affected, as well as adults. They may experience hearing and visual loss, bone deformities, facial disfigurement, nerve, and organ damage.
Perhaps your life has been touched by cancer?
All of the above tumors can cause disabilities through nerve and bone damage, but only the NF tumor can become malignant. The Children’s Tumor Foundation researchers collaborate with other researchers, including cancer research.
There is no cure. Multiple surgeries and chemotherapy for benign or malignant tumors is not an ideal long-term management plan.
Family and Friends,
Throughout 2010, I will be running, biking and snowshoe racing with other members of the NF Endurance Team. My second year!
As a member, I am seeking donations towards much needed research funds for The Children’s Tumor Foundation, a non-profit organization dedicated to finding a cure for Neurofibromatosis and Schwannomatosis.
Often, the Most Special Moments in Life, are Those We Share.
Carissa joined me last May, and we became a “team” within the team. We will both run as members of the NF Endurance Team in events, both together and separately, again in 2010.
“A Journey of a Thousand Miles, begins with a Single Step”.
My Story:
In 1994, I had surgery for abdominal and spinal tumors. NF was considered, but little was known at the time. I was truly blessed, as I walked without disabilities, out through the doors of the Mayo Clinic. In 2007, I returned to Mayo with a recurrence of tumors. Carissa suggested I “Google Schwannomatosis”. I did and up popped (really) The Children’s Tumor Foundation, and I found myself. The tumors were causing some left kidney failure, and once stabilized, in June and July of 2008; I had two surgeries, first abdominal and then spinal to remove the new tumors. I have a small piece of spine removed. For a second, and then a third time, I walked out through the doors of St. Mary’s Hospital on beautiful sunshine-filled, warm days, pain free from the tumors and without disabilities. At the time, this seemed huge and often scary to me throughout it all, but I’ve come to learn that it pales when compared to so many others with NF 1, NF 2, and Schwannomatosis.
NF 1, NF 2, and Schwannomatosis occur through either spontaneous mutation or genetically. Research in genetic testing helped me learn that my Schwannomatosis is not genetic. My family can know that they are not at risk. My heart felt an extra beat of relief to know that as my children approached the age I was when Schwannomatosis first touched my life; they would not have to be concerned that they may be affected similarly.
In November 2008, Dr. Spinner gave me an official “go ahead” to start running again. With my 3 surgeries, I have been able to “come back to running” three times now. I feel that the Lord must have a plan for me that includes running. After all that’s been done, and at the age I am now, it must be a “gift” that I can run.
In November 2009, I was again given the “go ahead” to keep on running. Oh, the spinal tumors are trying to make a teeny comeback, but for as long as I am the “keeper of the gift”, I hope I can use it to make, even a small difference, in the lives of adults and children with NF 1, NF 2, and Schwannomatosis.
I joined the NF Endurance Team to support finding a cure. I especially want to share my love of running, biking, and snowshoe racing to raise awareness for the children with NF 1, NF 2, and Schwannomatosis. Let’s help make their lives better so they can just be children! Throughout each race that I run this year, I hope to raise money to help make an impact in the research being conducted by the Children’s Tumor Foundation.
I benefited from NF research; I want others to also! But, I will need your help.
A Cure Will Be Found In the Next Step, the Next Mile!
Follow this link to view my video, written and produced by Roxanne, Carissa, and Matt:
Click here to watch the YouTube video!
Follow this link to share our team adventures in my Shutterfly Photos and Blog:
Shutterfly Blog Click Here
Follow this link to read and share my personal story at Sharing Mayo Clinic: Click Here
Follow this link to share Roxanne and Carissa's "Hot" race event in Houston:
HOT RACE
Our 2010 Events
Roxanne and Carissa Go To Washington!!!!! Whidbey Island Marathon and Half Marathon - April 11, 2010
Carissa runs Houston Rodeo Run 10K - Feb 26
Roxanne runs MN Get in Gear 10K - April 24
Roxanne runs RTC Spring Classic 15K - Rochester - May 1
Roxanne runs Celebration of Children 5K - Shakopee, MN - June 5 - Age Group First Place
Roxanne and Carissa run Minneapolis Marathon and Half Marathon - June 6
Roxanne runs CDI Back In Shape 5K - Bloomington, MN - June 12 - Age Group Third Place
Roxanne runs MacAttack 5K - Rochester - June 13 - Age Group Third Place
Roxanne bikes Superior Vista 19mi. Bike Tour - Washburn, WI - June 26
Roxanne runs Musky Fest 5K - Hayward, WI - June 27 - Age Group Third Place
Roxanne and many MN NF Endurance Team members are volunteers for the Minneman Triathlon, Oak Grove, MN - July 3 - earning a donation to CTF
Roxanne runs Firecracker 10K - Excelsior, MN - July 4
Roxanne runs Raspberry Festival 5 Mile - Hopkins, MN - July 18 - Age Group Second Place
Roxanne runs Lumberjack World Championships 4.7 Mile - Hayward, WI - July 25
Roxanne runs Urban Wildland Half Marathon - Richfield, MN - August 7
Roxanne and Carissa host the Hot Undies Run in Houston on August 21 - It was an incredible day! Over 500 guests from 21 yrs. to 61 yrs. came to support the Children's Tumor Foundation and NF. They really had fun!!! We were thrilled to raise $9,300 for the Children's Tumor Foundation
Roxanne runs Rochester Half Marathon - August 28 - Missed that beautiful limestone and metal sculpture trophy by one place again! =)
Roxanne and Carissa, along with family and friends, form a "stand-in" NFE Team and volunteer for the Chequamegon Fat Tire Festival - Cable, WI - Sept 17-18 - earning a $225.00 donation to CTF
Roxanne runs the 2010 American Birkebeiner Trail Run - Half Marathon - Cable, WI - Sept 25
Roxanne bikes the 27mi. Fall Century Tour - Hayward, WI - Sept 26
Roxanne runs the TC Medtronic 10 Mile - Minneapolis - Oct 3 -
Run, Change clothes, Cheer - TC Cheer Zone Competition - We took FIRST PLACE!!!
Earning a $750.00 donation to the Children's Tumor Foundation.
Roxanne runs the Monster Dash Half Marathon - Minneapolis - Oct 30
Carissa runs Run For Your Life 5K - Houston - Oct 23 - Age Group 2nd Place.
Carissa bikes the Moonlight Bike Ramble 10 Mile - Houston - 2:00a.m. Oct 23
Carissa runs the Seawall Half Marathon - Nov 20 - Galveston, TX - Age Group 2nd Place
Lace Up Against Breast Cancer Half Marathon was the last event of my 2009 fundraising year. For my inaugural year, I thought it was very fitting that my first race and my last race also benefited research at Mayo Clinic with the registration fees. I joined in 14 running events, 1 bike ride, and 2 snowshoe events from March 2009 to February 2010.
Learn more about NF and Schwannomatosis at The Children's Tumor Foundation web site
CLICK HERE.
And to learn more about the NF Endurance Team and where we are funding research visit our endurance team page and click on the tab "About" in the menu bar across the top; scroll down to "Dollars at Work".
CLICK HERE.
Information on joining the wonderful people who make up the NF Endurance team, training, etc. can be found at the team web page listed above. I'm the Team Captain for Northwestern Wisconsin and Rochester, MN.
If you would like to donate by check rather than credit, make check payable to: Children’s Tumor Foundation. Please include my Runner ID: ROC-4667-10.
Mail to:
Children’s Tumor Foundation, Inc.
Attn: NF Endurance
95 Pine Street, 16th Floor
New York, N.Y. 10005
Donations are tax deductible. Perhaps your company has a matching gift program?
Email Me: rothomas@centurytel.net
“This is the day the Lord has made; let us rejoice and be glad in it.” Psalm 118:24
I can’t thank you or tell you often enough, how much your support and donations in 2009 have meant to me. I hope you will support me and “run” with me again in 2010.
You are my “lifeline”, the one making a difference by helping me run in honor of my children, granddaughter, and my entire NF family.”
Roxanne
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