Thursday, April 09, 2009

Volunteers needed...

When Sophie was first diagnosed with Infantile Spasms, I felt lost and alone. I did not know a single person with a special needs child. I had support from family and friends but not the kind of connection I needed from someone who had been through what I was going through. So when I read this post about a couple starting a non-profit organization called HelpIsHere, I was motivated to help. Because it wasn't until I found the time to navigate through the internet that I finally found a support system...other families going through exactly what I was going through. I did not even know that online world existed. I am not exactly sure what their vision is for this organization, but wouldn't it be wonderful if every doctor and every hospital passed along the name of this organization along with the devastating news that your child's future is not going to be what you envisioned. Because when we left the hospital, we were given an expensive vial of medication and needles and was told to inject this into her leg (ourselves) once a day...our vial of hope that soon disappointed us. Nothing was said of what needed to be done for her hypotonia (low tone) or developmental delays. Through my research on the internet, I found out about Early Intervention (state-based therapy program for children age birth to 3 years) which got her the therapy and orthotics that she needed. Through my research on the internet, I found out about different medications, alternative treatments, alternative therapies and so much more that I was able to discuss with her neurologist. It took time...a lot of hours on the computer...a lot of sleepless nights, but it eventually all came together. But it shouldn't be that hard. To be able to go to one website and get all this information would have been incredible. Though I would have still felt devastated, I would not have felt alone or lost.

Reposted from

Victoria and I Need Your Help

Victoria and I are starting a non-profit project called 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 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 isn’t limited to SMA, children, or the U.S. -- in fact, the more diverse the group the better because will be aimed at all life-altering illnesses.

This online group will help us fine tune 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 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.


blogzilly said...

I'd volunteer to help with that. E-mail sent. Thanks for the heads up.

Victoria Strong said...

Dear Elaine,
I visit your site frequently to check in on sweet Sophie and today I planned to thank you for your beautiful comment about Bill. And then what do I find? -- Another eloquent message in support of our efforts. Thank you so very, very much. I am so sorry you had to navigate these waters alone for so long. It should not be that way and it boggles my mind that it still is. We will work very hard to make be the solution. Thank you for helping us do that.