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We made it!!! Just Ask drops in on the CTF NF Forum

imageIt wasn’t easy. It wasn’t pretty. But, it worked!

The Just Ask Tour traveled over 1,300 miles – from Houston, TX to Scottsdale, AZ – to attend the annual CTF NF Forum! Over mountains, through deserts, eating more fast food than we’ve ever eaten in our life, Reggie and I made it and lived to talk about it.

It’s been non-stop meetings and presentations packed with news on the latest clinical trials for Neurofibromatosis patients, the latest research and the latest facts about this disorder that affects 1 in 3,000 people!

I’ll write more after the conference is over but this is what the CTF website had to say:

April 17-19, 2015: Scottsdale, AZ
The Children’s Tumor Foundation’s NF Forum is a national patient and family gathering hosted annually in different cities across the United States.

The NF Forum allows those living with NF, and their families, to connect, support, and learn from each other while attending seminars on relevant topics pertaining to neurofibromatosis.

The 2015 NF Forum features: NF clinical and research updates, sessions on the personal and social challenges of living with NF, interactive Q & A sessions with NF specialists, fun activities, meals, social time with friends and family, and much more!

The Children’s Tumor Foundation, mindful of the high cost of transportation and family expenses, has underwritten a significant portion of the registration in order to keep the registration costs as low as possible.

 

 

 

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Just Ask World Tour to Make Stop at CTF NF Forum in Scottsdale, AR!

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Reggie Bibbs and I are excited to kick-off the Just Ask World Tour at the CTF NF Forum in Scottsdale, April 17! Come join us we finally get to meet all the great CTF people in Arizona!

April 17-19, 2015: Scottsdale, AZ
The Children’s Tumor Foundation’s NF Forum is a national patient and family gathering hosted annually in different cities across the United States. The NF Forum allows those living with NF, and their families, to connect, support, and learn from each other while attending seminars on relevant topics pertaining to neurofibromatosis. The 2015 NF Forum features: NF clinical and research updates, sessions on the personal and social challenges of living with NF, interactive Q & A sessions with NF specialists, fun activities, meals, social time with friends and family, and much more!

The Children’s Tumor Foundation, mindful of the high cost of transportation and family expenses, has underwritten a significant portion of the registration in order to keep the registration costs as low as possible.

FEES
Adult (Age 21+) $99 (USD)
Youth (Ages 17-20) $75 (USD)
Child (Ages 0-16) $50 for first child ($20 for each sibling)
Sat. Dinner Guest for non-registered attendees $100 (USD)
On-Site Registration: April 17-18, 2015 $150 (USD)
If you have any questions, concerns or need further assistance please email Traceann Rose at [email protected]

http://www.ctf.org/NF-Forum/NF-Forum-2013

 

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May is Neurofibromatosis Awareness Month

ABOUT NEUROFIBROMATOSIS (NF):*

Neurofibromatosis, or NF, is a common, yet under- recognized genetic disorder that can cause tumors to grow on nerves throughout the body.

• NF is more prevalent than cystic fibrosis, Duchenne muscular dystrophy, and Huntington’s disease combined.

• NF occurs in one in every 3,000 people and affects millions worldwide.

• NF can lead to blindness, bone abnormalities, cancer, deafness, disfigurement, learning disabilities, and excruciating and disabling pain.

• NF can arise in any family regardless of race or ethnic origin. Roughly half of all cases arise in families with no history of the disorder.

• NF has three distinct forms, NF1, NF2, and schwannomatosis.

• NF research is shedding new light on several forms of cancer, brain tumors, bone abnormalities and learning disabilities, ultimately benefiting the broader community in addition to those with NF.

• Progress toward ending NF is being made every day. Because of Children’s Tumor Foundation funding, there are over 40 on-going NF-specific clinical trials in existence, and 44 NF Clinics nationwide.

* Above information was provided by the Children’s Tumor Foundation (CTF.org)

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“Just Ask!” Goes to Antarctica

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"Just Ask!" Goes to Antartica

A friend of mine, Chad Leathers sports his Just Ask! shirt in Antarctica for a race4 research. nf. Chad and I have been friends for abut a year. He has a great story. If you enjoy good music and concerts follow the link. Tumorators. Chad has  projects going on to help fight for

a cure for nf.  Please visit his page to learn more as to how you can attend one of his concerts. I know I plan to make a surprise visit.  But don’t tell Chad. I want it to surprise him.  Thank you Chad for spreading awareness by wearing  my just ask shirt.

About The Tumornators

The Tumornators is a fundraising team started by the Leathers/Cone family in conjunction with the Children’s Tumor Foundation that is dedicated to raising money and awareness to end. Neurofibromatosis (NF) and Schwannomatosis through research.

On Christmas Eve 2006 while driving back to Georgia from one of Drew’s many surgeries at Johns Hopkins Hospital, the family decided to take a more active role in Drew’s illness. The foundation was born February 2007 when they put together a compelling slideshow telling Drew’s story that, accompanied by a heartfelt song written by Drew’s brother, Ben, appeared on the newly-formed web site.

boyspresurgeryThanks to the generosity of people like you, the grassroots campaign has raised over $100,000 to date through fundraisers, donations and with the help of friends like Atlanta Braves right fielder Jeff Francoeur and former NFL player Matt Stinchcomb and New Orleans Saint, Jon Stinchcomb.

All funds raised are donated directly to the Children’s Tumor Foundation so that Drew and others like him can live a life free of the devastating impact of tumors.

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Tumornators Search for Cure with Rock 4 Research Concertatosis

jeffThe Tumornators and Jeff Francoeur of the Atlanta Braves present the 2nd Annual Rock4Research benefit concert on Nov. 28 at Wild Bill’s. The concert features Matt Moore opening for headliner Rhett Akins.81ba489f-2ae5-4d2f-ba93-c855cbc2b7d4

Akins is known for country hits including “What They’re Talking About,” “That Ain’t My Truck” and the No. 1 hit “Don’t Get Me Started.”

Francoeur, Matt Stinchcomb of the NFL, Morten Anderson and other sports stars will spend time with guests at a VIP party beforehand. VIPs will also be able to enjoy catered food sponsored by Kroger, Chick-Fil-A and Chili’s. VIPs will also have the opportunity to bid in a silent auction featuring signed sports memorabilia and other exclusive items; VIPs are guaranteed to receive signed picture of Francoeur.r4rpics

All funds raised by The Tumornators are directly donated to The Children’s Tumor Foundation.  The foundation is dedicated to raising money and awareness for the painful illnesses Neurofibromatosis and Schwannomatosis.

mattFrancoeur has supported The Tumornators since their beginnings in 2007, and has donated $500 to the Children’s Tumor Foundation™ on behalf of The Tumornators for every home run he hit in his 2007 season with the Atlanta Braves.
Rock4Research tickets will be available at the door and online, costing $20 for the VIP party and $10 general admission. The VIP party begins at 8:00 p.m., and doors open for general admission at 7:00 p.m.

The first 50 guests will receive a Rock4Research T-shirt signed by Francoeur.

For more information, please visit www.rock4research.com or www.tumornators.com .

Contact: Chad Leathers [email protected]     706.366.7321

Contact: Brittany Raines [email protected]     678-522-6534