Rare Disease Report

First steps of a start-up rare disease company

NOVEMBER 20, 2014

In my last post on advice for starting a rare disease company I outlined how I helped one rare disease parent / advocate to do this and how others could do the same. On the same day, my articles of incorporation arrived in the mail for my newest rare disease company. It all started after meeting yet another rare disease parent at a lunch meeting of disease foundations at the North Carolina Biotech Center in early October.
Sharon King is the President of Taylors Tale, a 501c3 nonprofit founded for her daughter who has Batten’s Disease. After talking to her and hearing about her quest to raise money and then fund different approaches to treat the disease, I realized I had to do something to help. A few days later over coffee with a certified professional coach and good friend, Andrea Barry, I mentioned my need to start a “New Company” and my severe inability to actually do it. She said she would connect me to an accountant. I went off and wrote a 1 page outline of the company idea. I met the accountant a few weeks later and last week the company Collaborations Pharmaceuticals, Inc. (CP) was born. The week has seen me juggle my day jobs with helping CP take its first steps. 

During my evenings, with help from Michele Rhee at the National Brain Tumor Society, I have been putting together a pitch for a VC due today. Whilst writing the slides and text needed for the application process with Michele, it was very clear a website was required in order to submit, likely so the VC company could find out more. And I needed it fast. Fortunately I could piggyback on what I had learnt from employing a professional to redesign the Phoenix Nest, Inc. website.  They had built that website using Squarespace, and afterwards I had to make some edits, post some images etc. and so learnt a little on how to use the software. It took me the best part of one day to build the CP website using one of the templates Squarespace provides. Although it’s a skeleton site, it lists many of the people who have agreed to help. I was also able to get the URL I wanted too. I needed to set up a Gmail account for the company website so that I did not add to the spam in my personal email. That took a lot less time than building the website. I found a way to design a company logo for free too. I used the Vistaprint service and instead of paying for the high resolution image, I took a screenshot. This worked fine and also enabled me to design some business cards. Perhaps I could have paid for someone to do all of this but I figure I saved money and time doing it myself. The tools are out there on the web and are relatively accessible for the Do-It-Yourselfer. In all I spent about $200.

At the same time I have been refining a business plan and setting up meetings with a lawyer and also potential advisors in the area. At midnight last night I submitted the VC pitch. My one page company outline is now a 5 page business plan. Here is my one liner: “We bring foundations, scientists and pharmaceutical companies together using a software platform to identify treatments for rare or infectious diseases and deliver them to the clinic”.

And that is about it for the first week of this new company. On the positive side I have a website, business cards, VC pitch and a business plan. I am fortunate to have had so much great advice and help from different rare disease patients and parents. On the negative side, I am working late into the night, so it is like having another baby.

I know the company will evolve and now the hard work begins of funding that software platform and R&D to help these rare disease patients and parents. As they say, “we are now open for business”.

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