Storytime - Seeking support to tackle child's illness

#engagementstory

RECRUITING ALUMNI FOR RESEARCH AND CURE OF CHILD'S DISEASE

By MAX LEISTEN

The more urgent a need, the more alumni are likely to help because the reward (“impact”) is greater. Of course that assumes the basics of “relevance” (can I help?) and “privacy” (what if I have to say “no”?) are covered.

While 70%+ of questions we receive are career related, there are many different types of needs expressed by constituents. Staff (career services, researchers) looking for market insights, faculty looking for in-class speakers, seasoned alumni wondering about “next” in retirement. And sometimes truly urgent needs to tackle debilitating diseases.

As a father this one in particular hit home, and it’s rewarding to be able to recruit so many alumni to this cause.

Max

The "ask"

My husband and I are both graduates who met and fell in love in CITY. We recently had our first baby, Amy, and we are smitten. Margot has a devastating condition called ABC, which results in severe and global developmental delays.

I am starting a 501c3 non-profit foundation to fund clinical research into therapeutics and ultimately a cure. I am also interested in supporting families get access to clinical care.

I need help or advice from others with experience on 1) how to design the most effective fundraising approach, 2) how to pitch funding partnership to corporates, 3) general advice & lessons learned from anyone with experience starting a non-profit.

Amy is a blessing. We hope to harness the incredible alumni network resources to effectively mobilize towards a cure. Thanks to all for any advice and insight.

The "give" (one of four responses)

Dear ALUM –

I am so pleased Amy has entered your life though the ABC diagnosis must be such a challenge to confront.

I am a 2001 graduate and work for the Foundation for the NIH (http://www.fnih.org), which was chartered by Congress to support the NIH’s mission and we do it through convening public-private partnerships between the NIH, academia, life science companies, and patient advocacy groups. Within the last couple years, we launched the Bespoke Gene Therapy Consortium to help accelerate gene therapies for rare diseases. While ABC is not in the initial clinical trial portfolio, the hope is the portfolio will expand once there is proof of concept. Here is some information:

Website: https://fnih.org/our-programs/accelerating-medicines-partnership-amp/bespoke-gene-therapy-consortium-bgtc/

Video: https://youtu.be/UyaStKs4l18

If you would like to link up with this program, or with our emerging patient voices program (https://fnih.org/patient-voices/) I would be delighted to connect you with the people who manage them. Alternatively, if you would like some thoughts on starting your daughter’s foundation, I would be happy to do a phone or Zoom consult.

With warmest regards,
ALUM

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