Mission
LuciaGirl Pediatric Oncology Foundation (LGPOF) works to
• To honor our Lucia, a bright, pretty, little girl who bravely battled against malignant brain tumors.
• Encourage more effective drug and treatment development,
• Ensure adequate research funding and
• Address the needs of childhood cancer patients and their families.
LGPOF plans to empower law makers, healthcare, scientific and business leaders to make decisions that lead to significant, not just statistically but actual, tangible improvements in the treatment of pediatric oncology. Let’s leave the baby steps to the babies.
How
• Thorough evaluation and critiquing of current laws, policies & procedures,
• Expert opinion, and
• Passionate public advocacy.
Why
To shine a light on any industries or entities that create a barrier to treatment progress - intentional or not – and/or have a conflict of interest in finding successful treatments for cancer.
Foundation Objectives
- Provide opportunities for individuals and businesses to participate in fundraising and collaborate with other fundraising institutions to raise funds for cancer research.
- Provide informational, emotional and financial support for families.
- Open discussions with policy makers in the healthcare, academic and political arenas, as well as drug manufacturers on how to revamp scientific and clinical research protocols so that they become more efficiency and less redundant.
- Open discussions with the FDA on how to provide access to medications and treatments still considered “experimental (pre-Phase 1)” to those children who are catastrophically ill with few or no other alternatives to survive.
- Ensure that pediatrics gets its fair share of resources available and those resources allotted to pediatric oncology are guided by policies specifically for children that get the best results for children. (Not just watered-down adult versions)
- Push for a change in the secretive, competitive nature of academia and create a more collaborative atmosphere, in hopes to facilitate greater information exchange between institutions to get the best possible treatment options into public circulation quickly.
Programs
Funds and Research Team (F.A.R.T.)*
Raise funds for innovative, results-oriented oncology research and for financial assistance to families in need. There is a Junior F.A.R.Team with fun, kid friendly events and an Adult F.A.R.Team.
Parents of Oncology Patients (P.O.O.P.)*
Informational, emotional and financial support for families struck by this horrid tragedy.
Unify and rally to raise public and political awareness that the status quo in pediatric cancer care is unacceptable especially since status quo means our children are dying.
Advancement of Research Scientific Exchange (A.R.S.E)*
Scientific Task Force will review potential grant candidates and meet Think Tank style to highlight crucial questions that still need answers in order to insure the development of effective treatments and/or cancer cures.
*Lucia says she has a princess side and a tomboy side.
The tomboy side is fond of anything with wheels and burp & fart humor.
Sooo... like I said, we do this in her honor.
Legal Mumbo Jumbo and Transparency
UPDATE: The deed is done!
LGPOF is a registered 501(c)(3) public nonprofit organization recognized by the Internal Revenue Service. All donations are tax deductible.
A.) We have finally (June/2009) won The New York State Dept of Education's seal of approval.
(Snail mail & red tape doesn't begin to describe it, but we got through it.) Which means we were able to file the NYS Incorporation application, which was also approved (July/2009). We then were given the foundation's tax id number from US IRS. All these steps allows us to file LGPOF's NYS 501(3)b application.
B.) All foundation expenses are being donated by whomever handles whatever. For example, all legal fees, administrative worketc. are being donated by Lucia's family. All expenses for the fundraisers were graciously donated by the people involved with them. We will try to proceed like this for as long as possible to ensure that donations are used for their intended purpose - keeping kids alive.
C.) All funds raised at fundraisers and donations sent will be held safety and securely until the Scientific Task Force makes determinations on research proposals. Potential candidates and their proposals will be posted for all to see and your opinion matters. As it stands right now, if we reach our goal of 2.5 million dollars, Yale University will match it. Stay tuned for more developments.
D.) LGPOF will be careful to advocate particular positions on healthcare and research issues but we will not provide information about specific candidates and their positions on these issues.
We will do our due diligence to make sure that our communication is permissible issue advocacy and NOT prohibited political campaign intervention nor become impermissible campaign intervention by any statement or action that ties a position articulated in the communication to a particular candidate or election.
We all know that there's more to come in this section. We'll add it as soon as we learn of it or we get our hands slapped. Wouldn't want to piss off 'The Man' any more than we already plan to.
Yes, we need your money but we also need your passion!
(Sense of humor Optional)
