Holiday extravaganza brings awareness to Neurofibromatosis disorder

By Rachel Hawkins | DFW Newsflash | December 2017

Cookies with Santa, a holiday extravaganza was held on Dec. 10 at Embassy Suites Dallas Lovefield. This was presented by The Texas Neurofibromatosis Foundation® as fundraiser to help support research programs in the Dallas area.

This event originally started in Houston five years ago at MD Anderson Cancer Center.

The Texas Neurofibromatosis Foundation a nonprofit organization, was formed in 1980 to battle neurofibromatosis and to serve the increasing number of men, women and children in Texas suffering with this disorder.

Neurofibromatosis (NF) patients, families and friends celebrated the holidays with festive crafts, holiday music, caroling, cookies, hot cocoa and taking photos with Santa. The 1st annual event in Dallas, chose the Smith family as the ‘Cookies with Santa 2017 host family.’

The event also held a silent auction, a kissing booth, and a balloon artist that created holiday inspired balloons. Body art stations were available to the kids where they were able to receive temporary holiday tattoos and face paintings. The children were also able to build small wooden holiday houses along with other arts and crafts like drawings and paintings.

Neurofibromatosis, also called Recklinghausen’s disease, is a genetic disorder that is the uncontrolled growth of tumors along the nerves anywhere in the body, internal and external, and at any time throughout an individual’s life. It can cause learning disabilities, high blood pressure and epilepsy, and it can affect the development of the brain, cardiovascular system, bones and skin. NF can also result in disfigurement, deformity, deafness, blindness, brain tumors cancer and even death.

At the age of two, the Smith’s family daughter, Sasha Dwanyelle Smith, was diagnosed with NF. When she was born her parents noticed spots on her body that they initially thought were birthmarks. When she turned four, Sasha began to develop tiny neurofibromas throughout her body. They noticed that Sasha’s head was a little oversized and she was having some difficulty with her speech.

“It’s an honor and a privilege to talk about our daughter and put her story out there,” the mother of Sasha said. “We are just thankful for all of the support and the research going on,” the father of Sasha said. “It gives hope to a lot of families and a lot of kids. It’s promoting a lot of positive energy and we are happy to be a part of it.”

Several years ago, they started attending Texas NF support groups at Cooks Children’s Hospital, and it helped their family understand the disorder.

“This event is an opportunity to get our patients together who have NF,” Cindy Hahn, Executive Director of the Texas Neurofibromatosis Foundation said. “We have a silent auction as part of the fundraiser, and all of the proceeds that we raise will go back towards patient outreach for support groups. It will also go to support clinics, Texas Children’s Hospital, and Cook’s Children’s.

“This is important because it brings patients who have NF together,” Hahn said. “Not a lot of patients have met others with NF, so this is a great way to bring fellowship and to enjoy the holidays together. They all really do feel like they are in one big family.

“We are hoping to grow this event. NF is a genetic disorder in which tumors grow on the nerve and it doesn’t get the awareness it really needs,” Hahn said. “This event is also an opportunity to raise awareness for NF, as well as to support our doctors, patients and clinications who work really hard for NF.”

Besides providing funds for research, the funds will also go to other activities for the children who have the NF disorder. The funds will also help support other symposiums and clinical education opportunities for the families. The Texas Neurofibromatosis Foundation will have grants where certain doctors who are involved in the NF research, are able to apply for the research grants.

NF is said to affect an estimated 100,000 people located the U.S., and it can affect all ethnic groups. There are three types of neurofibromatosis, NF1 usually begins while the patient is a child, and it represents 90 percent of cases. NF2 starts while the patient is a teenager, and it represents 10 percent of cases. It can lead to hearing and balance problems, and it can occur once in every 25,000 births. NF3 is called Schwannomatosis and it’s one of the rarest cases. The Children’s Tumor Foundation states that it occurs in every 40,000 births.