I have made this commitment about 16 months ago to change the brain cancer community. You know that when I set my mind to something I DO NOT fail and will utilize every resource possible to accomplish that goal. You know that I always used movies to help parallel a reality.. like Braveheart "uniting the clans after losing his wife" or Seven Pounds (true devotion to change lives after losing his wife). I guess I can draw inspiration from a storyline in a movie. LOL You will truly live eternally via all that we have accomplished and one day this organization will be turned over to our daughter, Cevan, as Chairwoman and C.E.O. (not like Godfather III with illegitimate funding trying to use a false guise and coming from an organized crime syndicate LOL), and she will be proud of her mother and father for their accomplishments for the greater good. Till that day my love, smile down on us from heaven and ask God to give us guidance...
C.E.V.A.N. Louie Foundation will be non-profit society dedicated to the treatment and education of brain cancer to families and friends affected by this disease. C.E.V.A.N.'s acronym stands for Cheryl Evan Ventures & Acquisitions Nationally will be the only privately funded society which will take no external charitable donations. The Board of Directors and Executives will take no salary and every dollar and cent will go directly to the target demographic of its community. The Board of Directors will consists of industry leading doctors, researchers, scientists, and activists within its respective community. All funds will go directly to the acceleration of clinical trials for FDA approval, educational programs on preparation and treatment planning, designing and institute new diagnosis protocols within the major healthcare systems and hospital facilities, assistance with disability and medical insurance benefits programs, financial assistance to families, logistical family planning, housing and transportation for brain cancer patients, and building solidarity and unification within the brain cancer community. "There are those who make waves in this world... and those who will bring a tsunami..Never underestimate sheer devotion and passion to overcome" quote by Evan Louie, Founder & CEO of C.E.V.A.N. Louie Foundation.
2/15/09 Organizational framework near completion. Board of Directors identified.
2/20/09 Outreach with educational programs and developmental planning
3/17/09 Met with Cedars Sinai brain tumor center oncologist at the facility. 2 hour meeting to discuss medical advisory board and have commitment. He will also consult with other staff to bring the remaining neuroscience / neurosurgery department to provide direction.
3/18/09 Al Musella, founder of the Musella Foundation, called for 2 hour discussion on brain cancer developments, plagues of community, resource planning, and emailed additional information on entry point into community. Referred to several sites, scientists, and new targets for funding.
3/18/09 Called by leading scientist team to discuss launching a mutation of a treatment that is going into Phase I clinical trials which has proven to target cancer cells with minimal impact to healthy brain tissue. The treatment delivery mechanism is via catheter and has a highly successful chance of efficacy. Team of research scientists consists of R&D teams responsible for current treatments and regimens available for brain cancer. They are now at various large pharmaceuticals or biotech firms.
3/18/09 - C.E.V.A.N. Louie Foundation will now be public domain and 501(c)3 status to be filed and organizational infrastructure developed within 6 week trajectory.
3/19/09 Conversation with Al Musella to gather Bylaws and extraction from Secretary of State. Tentative meeting established in NY for tour of PA lab facilities and designation of attendees for this meeting.
3/19/09 - Recruited Biotech consultant from Premier Research a CRO (Contractor Research Organization). Proposal to discuss services they can provide in biotech sector and involvement with scientific community. Discussed SEER (Surveillance of Epidemiology and End Results) Database of all different cancers and end results of investigations (Thousands of Terabytes of Data). They provide more exposure for NIH grants and further exploratory publications for scientific community. Further discussed idea of establishing Consortium that will aggregate all the industry leading brain cancer community including but not limited to principle investigators, scientists, industry leading neurosurgeons and neuro oncologists from brain tumor centers, NPO's, biotech, pharmaceuticals, brain cancer leading activists, etc.. to develop steering community within a public domain. This Consortium will be a panel discussion and steering committee addressing the agenda of challenges facing the brain cancer community today. There are consideration to build direct contact to the FDA for funding via the Orphan Drug program for early phase clinical trials. Considerations have been made to contact ICH (International Conference on Harmonization) which is the global consortium of standards of policies and protocols for new pharmaceutical drugs to be approved. Gathering resources to help expedite proposals to FDA, medical research, study design, etc..Identifying location of brain tumor bank for tissue repository accession. The members of this Consortium can excise portions and do genomic based testing and identify triggers. This is a cryogenic controlled environment for biomarker testing.
1.) Identify FDA regional contact and acquire information on Orphan Drug program to help accelerate phases of new treatment regimens for brain cancer.
2.) Orchestrate methodology and planning for Consortium and utilize private financial backing to fund event. Budgetary planning measures will be accounted for.
3/19/09 Conversation with medical adviser from Cedars Sinai about referral to brain tumor tissue bank. We will require public accessibility for other researchers and scientists within the community.
3/19/09 Recruiting new divisions / departments for organizational chart development.
3/20/09 Spoke to Biotech advisor regarding CRO services involvement as independent consultant. Escalation to Global Director for initial discussion. Considerations for NIH grant to fund Consortium or privately fund event. Phase I program rollout identified for outreach programs. Develop marketing and outbound call center to target all major healthcare systems and hospital facilities to institute newly brain cancer diagnosis protocols. The delivery mechanism shall be via grassroots efforts or direct implementation via FDA guidelines or methods of standardization. Organized and centralized effort to require that all facilities now use cryogenic environment for brain tumor tissue repository (to qualify for clinical trials as secondary treatment options and track biomarkers) Create awareness that these facilities pose a potential legal liability by not providing newly dx patients with this option or legal consent forms that they are aware of this protocol. Build network of existing insource and outsource laboratory environments regionally for tissue repository storage. Key contacts shall be identified.
3/20/09 – Phase II to be rolled out - communicate with all leading foundations to pull resources and expedite funding for clinical trials of brain cancer. Consideration to join Blue Ribbon Network when fully operational. Identify standardized informational package to distribute to newly dx patients. Consider protocol to inform new Dx patients to read educational pamphlets and attend monthly UNBIASED webinars / seminars on interpretation of their medical insurance plans, disability insurance and other financial resources available, available clinical trial treatments, noteworthy brain tumor facilities, expectations of primary caregivers, family planning for brain cancer (Living trust & estate planning, advanced healthcare directive / POA, etc..) housing and transportation resources available for brain cancer families, etc… First conference should be a steering committee and / or panel discussion of the brain cancer community consisting of the NPO’s and feedback from the brain cancer families worldwide.
3/21/09 – Discussion about East Coast based NPO that collects, stores, and freezes umbilical cord and stem cells for both research and to be used by donor if needed. Developing lab facility for genetic analysis of brain tumor samples and repository contains 1000 tumor samples. Consideration for centralized lab that collects and stores brain tumor samples, analyzes them, and develops vaccine. Accession to public domain for scientific research, funding, and transportation mechanism TBD. Still waiting on West Coast based brain tumor tissue repository information and availability.
3/22/09 – Working on aggregating findings of existing database of brain cancer regimens for analysis. Bridging biotech advisor and centralized database for analysis. Web site development, content, and organizational chart development underway. 501c3 filing will be addressed after completion of By-Laws and Article of Incorporation.
3/22 C.E.V.A.N. Louie Foundation will be attending the event for Avastin approval by the FDA in Spring Valley MD. Will be sending out request Monday 3/23 to speak at this event on behalf of brain cancer community but deadline was 3/20. We have a compelling story since Cheryl was on the Avastin CPT-11 regimen and 80% and 95% reduction in tumor size in subsequent MRI’s with documentation that can be authorized for release (HIPPA regulatory guidelines) for public domain. Will provide strong credibility on overall impact of our community.
3/23/09 Joined Grey Ribbon Crusade network. A network of Non Profit Organizations pulling together for funding projects correlated to brain cancer. Current pipeline of projects estimated at approximately $600k total. Fundraisers and charitable donations depressed due to economic conditions for these NPO’s. DC Vax project is interesting since moving to Grade II patients and pediatrics.
3/24/09 - Our organization is now involved in the PSA's (Public Service Announcements) for the brain cancer community. The brain cancer awareness month is in May and C.E.V.A.N. Louie foundation will be an integral part in pushing this forward to gain media exposure as a sponsor. PSA's will be provide awareness and fundraising for the Grey Ribbon Crusade who C.E.V.A.N. Louie foundation now belongs to. Proposed idea to contact 1995 World Rugby Champion, Ruben Kruger, who is currently fighting brain cancer to be a iconic speaker (like a Lance Armstrong) of our community. Logistical planning and framework in planning phases for video, DVD, and development of PSA storyboarding in place. Print ad to be developed but may require editing resources. FDA declined a slot as a speaker since I missed their 3/16/09 deadline but still will be present to support our community.I guess the government doesn't have much flexibility on their deadlines. LOL
3/24 All resources allocated for Public Service Announcement with green light. C.E.V.A.N. Louie Foundation will be shown as sponsor on the message when aired. Brain cancer community, we are making strives to get our message out there!!!