What NF Forum Meant to Me

on Friday, 24 April 2015. Posted in Blog

Nicole Steinert 1Last week, the NF community gathered in Scottsdale, AZ for a long weekend of leadership training, research updates, and patient and family support. We asked Nicole Steinert to reflect on attending her first Leadership Summit and NF Forum.

When I signed up to attend the NF Forum, I had no idea the impact it would have on me. I was asked to attend as a Council Member; I was honored for the invitation, but I was hesitant to go. It would mean leaving my family for five days. I've never left my kids for five hours, let alone five days!

With some creativity and a lot of help from my mom, I was able to make it happen. And man, am I glad that I did! From the start of the Forum, I felt welcome. It was such a warm, inviting environment.

We jumped into event planning and networking. We spent the day collaborating and learning about the resources available to us and what other chapters across the U.S. are doing to raise money and awareness.

Annette Bakker Byline in NonProfit PRO: Uprooting the Foundation

on Tuesday, 14 April 2015. Posted in Foundation News & Events, Blog

Screen Shot Fundraising Success Mag April coverAnnette Bakker, PhD, President and Chief Scientific Officer at the Children's Tumor Foundation, wrote an article about innovation, collaboration and fighting back against rare diseases for the April issue of NonProfit PRO.

Corner Office : Uprooting the Foundation
Innovation and collaboration are the only way to success.

"Old-fashioned." "Social entrepreneur." "Venture philanthropist." "Philantrocapitalist."

A lot of phrases—some positive, some negative—are being bandied about these days as those of us who work in the nonprofit medical research sector seek to actualize our missions. Well-meaning commentators needlessly snipe back and forth while espousing their analyses of the pros and cons of either the traditional nonprofit model or those more aligned with a business-oriented approach.

Often, the heart of the matter is lost during this war of words. Medical research foundations, especially those specializing in rare disease research, are focused on ensuring that safe and effective treatments and cures reach those living with the disease. These patients and their families seek answers to their problems now—not 20 years from now, but today.

New Partnership to Create First Center Dedicated to the Development of Biomarkers for Neurofibromatosis

on Thursday, 09 April 2015. Posted in Foundation News & Events, Blog

Children’s Tumor Foundation and National Biomarker Development Alliance Join Together to Address Critical Research Need

nbda logo 1The field of pediatric tumors suffers from a lack of biomarkers, and nowhere is this more evident than in children’s tumors associated with the genetic disorder neurofibromatosis, also known as NF. The absence of measurable biological indicators makes this multifaceted disease even more difficult to diagnose and treat, resulting in fear and frustration not only for patients, but also for the doctors and clinicians working to better their lives. The Children’s Tumor Foundation (CTF) and the National Biomarker Development Alliance (NBDA) have partnered to advance biomarker development in NF - with potential for applications across other rare disease areas.

NF Heroes in the News

on Friday, 03 April 2015. Posted in Foundation News & Events, Blog

Screengrab Arizona newspaper articleArizona NF Hero John Jacques spoke with his local paper, the Daily Courier, about what it means to live with NF, and how he finds support through the Children's Tumor Foundation.

Click to read the full article.

Want to see more NF Heroes in the News?  Follow us on Facebook and check back here on the blog!

Women Working to End NF

on Monday, 02 March 2015. Posted in Blog

REiNSMarch is Women’s History Month, a time to highlight the contributions of women to events in history and contemporary society. Throughout this month, we'll showcase women working to solve neurofibromatosis – the scientists, researchers, clinicians, and many others contributing to efforts to find effective treatments for NF.

Click to read more!

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