ABOUT US
CureNFwithJack (“CNFWJ”) is a nonprofit corporation co-founded by Jack Burke, Jake Burke and Beth O’Brien, whose mission is to find an effective treatment or cure for individuals battling neurofibromatosis (“NF”) through the funding of research. The inspiration and motivation behind CNFWJ is their son Jack Burke, a dynamic, inspiring boy who lives with NF. CNFWJ is based in Milton, Georgia, and has been granted 501(c)(3) status.
CNFWJ is committed to accelerating medical research, driving community action, and raising funds to end NF. With Jack’s help, CNFWJ has encouraged thousands of people previously unfamiliar with NF to learn, donate and spread awareness about NF so that the vision of a cure can be realized. CNFWJ holds multiple events and golf tournaments throughout the year, raising over a million dollars on its own behalf as well as other NF-related entities [including the Children’s Tumor Foundation and Cupid’s Undies Run].
Central to CNFWJ’s goals is the involvement of and support from individuals who are not affected by NF. Your time, talent or treasure can have a profound effect on the many that suffer from this disorder. Through community interest, we can help change the face of this disorder.
We hope that creating awareness, bringing people together, and supporting the medical community in its research endeavors will lead to the day that NF no longer exists.
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The mission of CNFWJ is to find an effective treatment or cure for NF through the funding of research.
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To create a world where NF no longer exists.
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CNFWJ operates under the guidance of the core set of values outlined below, which serve as a compass in the fight against NF.
Attitude.
CNFWJ is “in it to win it.” CNFWJ operates with the unwavering belief that a cure and/or effective treatment for NF can and will be found with the proper funding, talent and perseverance (and perhaps, like anything else, a little luck too). None of us believe this is an impossibility. No one at CNFWJ settles for anything less.
Immediacy.
We believe that time is of the essence for all of those affected by NF and seek to find a cure within Jack’s lifetime. Accordingly, the foundation of all of CNFWJ’s goals is based on avoiding time-consuming duplication of efforts and accelerating research to the best of our ability.
Perseverance.
CNFWJ’s vision of ending NF is simply stated, but far from easy. We are steadfast in achieving this goal despite the difficulties or delays in achieving it. The perseverance of all of those with NF provides motivates all those at CNFWJ to persevere.
Collaboration.
We value, acknowledge and seek to align ourselves with all outside partnerships and the relationships of those who help CNFWJ find a cure for NF.
Integrity.
CNFWJ will always operate in an ethical and honest manner in all transactions and with each other and others outside of the organization.
Teamwork.
CNFWJ, its Board and its volunteers will treat one another with respect and will join together to share ideas, team together to execute actions, support one another’s ideas and efforts and celebrate the team’s successes.
Inspiration.
CNFWJ’s Board and volunteers will strive to advance Jack’s inspirational battle against NF and look to be inspirational themselves in contributing to the fight.
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Increase investment in peer-reviewed neurofibromatosis research.
Drive community action for neurofibromatosis.
Expand fundraising in on-ground and virtual communities.
Assure effective, efficient and ongoing organizational governance and management.