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Nathan’s Battle Update Meeting “The Cure is within Reach” Perry Meridian High School Auditorium April 22, 2001 6:30 p.m. Anyone and everyone is welcome Come Learn How you Can Help. www.nathansbattle.com. Meeting Objectives and Goals.

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  1. Nathan’s Battle Update Meeting“The Cure is within Reach”Perry Meridian High School AuditoriumApril 22, 2001 6:30 p.m.Anyone and everyone is welcomeCome Learn How you Can Help www.nathansbattle.com

  2. Meeting Objectives and Goals • Update community on accomplishments, successes and challenges • Continue to obtain help from community to solve our funding problem • Define specific ways people can help • Generate other ideas

  3. Agenda • Background and Accomplishments • Cornell Project Details • The Problem to Solve • Solutions • Goal • Steps to follow • You can make a difference • Sample materials available • Current events

  4. Background and Accomplishments • Nov ‘99 “Action for Therapy” conference • Identified potential gene therapy and met with FDA • Developed Business Plan to market our disease • May 2000 “Clinical Trial Initiative Conference” • NBF is nationally recognized by the NIH as a research leader • October NIH conference for Gene Therapy • Developed Non-For-Profit approach to develop therapies and presented to world leader in gene therapy at Cornell

  5. Background and Accomplishments (cont.) • NB accepts Cornell’s proposal to perform first phases of Clinical trial project • National media exposure from CBS (48 Hours and The Early Show…) • Cornell’s Feasibility Study returns promising data • Received Devastating news on P.J. • Negotiated agreement to begin development of the “cure”/ a therapy. The formal project began 3/15/01 • Developed work plan with milestones, tasks, timeframes, and funding requirements. • Raised over $400,000 to date

  6. The Cornell Project Details • Batten Disease – Why gene therapy will work!!! • Formal project in progress with a major university to develop a therapy • Work plan with milestones and time lines • Manufacturing and testing started 3/15/01 • Clinical trial will begin between 18 and 30 months depending on funding

  7. Project Work Plan Feb 2002 – 9 Months 9 Months 6 Months 3 Months

  8. Milestones Min. Estimated Cost Feasibility study and project planning $125,000 Drug development and testing procedures $300,000 Pre-clinical studies for distribution and expression $500,000 GMP vector process development $300,000 Clinical protocol development $500,000 Toxicology studies Previously included FDA submission and approvals Previously included Clinical trial initiation $500,000 Minimum Estimated Total Costs: $2,225,000 Project Milestones

  9. Project Financial Overview

  10. The Problem to Solve • Funding • Project is estimated to cost over $2 million • Cornell agreement of $100,000 per month to keep the project moving. Cornell is taking a risk to proceed without funding secured • Our funding runs out at the end of July

  11. How to Solve Funding Problem • Fund Raising • Other Foundations • Individual Philanthropists

  12. Goal in Targeting Individual Philanthropists • Main goal is to receive funding to support a gene transfer clinical trial. • We need to get our project in front of individuals who can help solve our problem • Network to identify relationships • Ask for money and you get advice, ask for advice and you get money

  13. Advantages for a Philanthropist • A donor can make a difference and save children’s lives with their financial contributions. A donor will be able to actually see the return on their investment as the project achieves milestones and ultimately saves lives. • Advancing medical science • Future of medicine • Cutting edge technologies • A donor can receive national media exposure for their generosity and good will • Involvement in a high profile, creditable project.

  14. Steps to Follow • Identify Philanthropic Individuals • Research Individuals Interest • Approach Philanthropic Individuals • Follow-up - Closure

  15. Identifying Philanthropist Targets • Library – many sources, Journals, indexes, guides… • 990 Forms from NFP (IMA, ICM, Zoo) • Internet • Annual Reports of NFP • Magazines – Time, People, Fortune, Indpls. Monthly… • Newspapers –Star, IBJ, New York Times… • Network (ask everyone you know) • Personal Contacts • Business Contacts • Fraternity /Sorority • High school • Email

  16. Researching Interest • Research background to identify interest • Children/ Family • Technology • Media attention • Spouse’s interest • Research/network to find relationship with individual (friend of a friend or to a relative of the person) • Customize material for individual and their interest • Materials are on the web site. They are electronic so that you can customize • Example of targets for each letter type

  17. Approaching the Individual • Hand deliver or have material hand delivered • Mail to address and in a manner that will get the materials reviewed

  18. Follow-up to Obtain Action • Ask for advice • Inquire on status or comments and try to get action

  19. You Can Make A Difference • Challenge each of you • You can make a difference • Minimum time requirement (approximately 2 hours /week for 4 weeks) – Total of 8 hours needed • Identify 5-10 targets (week 1 - 3 hours) • Research (week 2 - 2 hours) • Approach (week 3 - 1 hour) • Follow-up (week 4 - 2 hours) • We can do it. We can accomplish what the expert told us was not possible.

  20. Sample Materials Available • Life Saving Gene Therapy Project Overview* • Nathan’s Story Sheet* • Sample Wealthy Individual lists • Sample Letters from Web site* • Cornell Feasibility Cover Letter • High Level Cornell Project Work Plan • You Can Help! – Handout in the back * Materials are on the web site

  21. Nathan’s Battle Initiatives • NIH grant mechanisms • Foundations • Individual’s • Large • Media Contacts – Oprah, Rosie, CNN, national publications

  22. Upcoming Fund Raising Events • Mark Schultz benefit concert - May 13, 2001, 7p.m. • Greenwood Christian Church 2045 Averitt Road;Tickets available for $15 at Berean Christian Bookstore in the Target Mall in Greenwood, In. • Nathan's Battle Run/Walk - June 2, 2001 • Sign-up on your way out • Nathan's Battle at the Ritz - June 22, 2001Tickets: David & Mary Salon, 1540 East 86th Street Indpls.;or by calling 883-2204 or 575-0283 Doors open at 6:30PM • Third Annual Golf Outing – Summer, 2001

  23. Summary • We have a potential CURE! • We now have a formal project in progress to develop the CURE with Cornell University • Funding needed fast • Affects project vitality (project can stop) • Affects timeframes • WE NEED YOUR HELP!! (Nathan and P.J. need you)We have limited resources • Networking and personal connections to philanthropists and national media • Identify, Research, Approach, Follow-up • Oprah, Rosie, National Publications

  24. Questions/Comments/Suggestions

  25. Thank You “What was once a battle is now a WAR”

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