A new rare disease company rises up to the challenge – Phoenix Nest

Last November I met Jill Wood at the Partnering for Cures meeting in New York. I blogged back then that she was “Founder and President of Jonah’s Just Begun. Her son was diagnosed with Sanfilippo Syndrome, Type C, an incredibly rare disease. She is doing everything from fundraising to getting researchers to find a cure – essentially like a virtual biotech and she needs financial support as it is a race against time.” I do not know why but my very first suggestion to her was to found a company. Well Jill has done that and so much more since (like helping craft the PDUFA wording) and today her company Phoenix Nest launched its website.

Jill really inspired the ODDT app which is also on the front of the Phoenix Nest webpage. The Sanfilippo Syndrome community is one of the active user groups. I am also happy to volunteer my spare time to help get Phoenix Nest off the ground by submitting grants etc. We often hear of how people can use their spare computer cycle time to do things for worthy causes..well human cycle time is valuable too. So if any of you want to help rare disease groups/ companies by grant writing, business development or running experiments in your labs (testing compounds in vitro, in silico etc) please let me know and I can put you in touch. In many cases these groups could benefit tremendously from what we take for granted (e.g. writing a 6 page SBIR for instance, or being on their advisory board). I am sure with the layoff at pharmas many of you are looking for projects while

Jill introduced me to a second parent advocate Lori Sames, Executive Director of Hannah’s Hope Fund who is another parent  that has founded a foundation, raised funds and is also founding a company and going after grants as a way to fund her company research. Both of these dynamic and driven individuals are an inspiration in the sense that they are personally taking on very complex diseases, very complex science and of course the nightmare of regulatory issues to try to discover, test and bring to the clinic a cure. Just to show you do not necessarily need a degree or doctorate in a science to do any of this. My discussions with both Jill and Lori are at a level of science that is beyond my background, they have crammed so much information that is current, they know who is doing what and they have also extrapolated beyond to pick up ideas from elsewhere and see if they can help their respective diseases.

The inspiration to create tools that help parents and patients to grasp the underlying science, network with fellow advocates and patients is really driving me. If we can get more disease areas involved in simple apps like ODDT, in which social networks are leveraged, (social media is used and mined), I think we can then go a long way to accelerating progress, reducing duplication of efforts and give the rare disease community a stronger voice.

Watch this space as Phoenix Nest progresses.

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