Victoria and I are starting a non-profit project called HelpIsHere.org. HelpIsHere is an online community driven website that will help those impacted by life-altering illness answer the difficult post-diagnosis question – What now?
In short, the mission of HelpIsHere.org is to help people navigate resources specific to their disease, demographic, and geographic region. NOTHING like this exists, and in our experience the need is enormous.
We are recruiting an online focus group of 20-30 people who have in the past or are currently dealing with life-altering illness – either as a patient, caregiver, family member, friend or professional. The group isnt limited to SMA, children, or the U.S. — in fact, the more diverse the group the better because HelpIsHere.org will be aimed at all life-altering illnesses.
This online group will help us fine tune HelpIsHere.org to make sure it is truly a helpful resource.
So, what will your involvement entail? We know your time is limited and valuable, so you can contribute as much or as little as you want. We will pose questions to the group, like – “What do you think of the way the site is organized? to more integral questions, such as We are thinking of doing X,Y, and Z. What do you think?. The questions will all be opinion based on your experience.
If you are interested, please email me at [email protected] and we'll take it from there. And please forward this to anyone you think may also be willing to help make the post-diagnosis process a little easier.
Thanks so much in advance.