Giving Tuesday- Giving changed me too

I wanted to help Jonah’s Just Begun so I contributed this to Giving Tuesday..please give it a vote..

November marks the anniversary four years ago that led to my commitment to try to help families find the cure for rare diseases that affect their children. One meeting at a conference led to a cascade of events that has since had a significant impact on my scientific research, collaborations, and colors virtually everything I do.

I am inspired to give my time and money by people that do or want to do the unexpected. For 99.99% of the population it would be something that is virtually impossible to do. Jill Wood as the co-founder of Jonah’s Just Begun described to me back in November 2011, doing just this, pulling together the knowledge, scientists and funds so that she could catalyze research into her son Jonah’s rare disease called Sanfilippo syndrome. In the years since, Jill went further, she started to have the same impact on other closely related diseases, and together this led us to found a company as an additional way to go after National Institutes of Health funding for the research performed at academic institutions.

How many parents could do all this one might ask? Jill introduced me to another parent with a rare disease foundation called Hannah’s Hope Fund (who has funded a gene therapy and brought it to clinical trial), and in turn she introduced me to yet another rare disease parent who started the Hereditary Neuropathy Foundation. All of them are parents, not scientists I might add, doing the seemingly impossible, scouring the world to find research that could catalyze a treatment to be developed. How could this not inspire you to help and donate your time and money to all their causes? At the same time it made me recalibrate what was possible. A little time and money devoted to their causes could go a long way.

Every November I remember that moment that kicked it off, Jill sitting across from me describing a heart wrenching story every parent would dread, being told her child had a fatal disease. Now every scientist I meet I tell them the same story and it leads to new connections, scientists I should meet, compounds to test and more. We are not alone in wanting our research to be funded, to succeed, to be published, and to be shared for the benefit of humankind. While at times it may seem what we do is far removed from the clinic, thousands of parents of children with rare diseases depend on us and our skills. Many scientists will not realize the importance of what we can offer until they meet people like Jill, for whom nothing is impossible. We can directly help rare disease parents and families in varied ways by giving our time, our advice, our financial support and letting them know that they are not alone in their quest for a cure. I have done all of these and it has changed me and what I do. Nothing is impossible or unattainable, we work hard, and we find people that can help us achieve the goal.

Supporting and giving to rare disease foundations like Jonah’s Just Begun, Hannah’s Hope Fund and the Hereditary Neuropathy Foundation can have positive unintended consequences. It can alter your perspective on what is truly important in life. It may even change your career, lead to a new business idea, create jobs, develop products, and hopefully cure the disease. If one person leading each foundation could make all this happen over and over again then our giving either in time, expertise or money can be a powerful multiplier that creates giving stories that demand sharing repeatedly and provides hope for the families who are living with these diseases.

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