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Q & A: Family Perspective with Pennie Brooks

Pennie Brooks is a local NF advocate, activist, and organizer. She is a nurse who lives in Nashville and has a daughter with NF1.

Q: What roles do you play in the NF community?

A: I am a member of the Volunteer Leadership Council for the Children’s Tumor Foundation. We are dedicated volunteers who work all year and are passionate about Ending NF. Council members are the public ambassadors for patient education and community outreach within the Foundation. We are often the first contact that a family has when learning of a diagnosis. Council members learn how to better advocate for NF with legislators, learn about fundraising, support NF clinics, and raise awareness about NF in their local community.

Also, I am on the Advocacy Task Force for CTF, and we are working on a big project. Once the new administration begins in January, we will know better how to proceed with the Congressionally Directed Medical Research Programs. For NF, this program has been a major lifeline. I will also set up an NF Awareness Day again this year at the TN Legislative body when they are back in session.

Q: What motivated you to attend the 2016 NF Forum?

A: My daughter was born with NF, and I look forward to attending the Forum each year. The NF Forum is also for the NF community. It 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. NF experts from around the world cover the most current information on NF, including how to manage the symptoms of NF and updates on treatment strategies. There are fun activities, meals, and social time with friends and family.

Q: What were the highlights of the NF Forum?

A: Researchers and clinicians from all over the world displayed their research posters for our review, and many were available to answer my questions. I saw research going on from as far away as Japan, various countries in Europe, and Brazil in South America to name a few. There is a global concern about NF.

Texas Governor Greg Abbott was the keynote speaker for this largest NF gathering in the world. He spoke inspiring words about ending NF, saying, “the cavalry is coming and nothing can stop us!”

There was also exciting news related to the MEK Phase II clinical trial and the positive results of a child who had a reduction in his inoperable tumors. This is why we continue to raise funds to further potential treatments to manage the growth of these tumors.

Q: Besides the annual NF Forum, what’s an event that you are looking forward to in 2017?

A: There’s a lot to look forward to, but don't forget about Cupid’s Undie Run ( on February 18th! The fundraising goal here in Nashville is $175,000 to benefit CTF.

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