Stars in my Hand, ALS , and Bright Eyes

Sat, Jun 16, 2007

As I travel around the blogosphere and visit with my favorite bloggers like Jane Ann and Kristin, I aspire to be as they are: eloquently descriptive writers who take their readers with them on their journeys through life, sharing the good times, sometimes seeking solace and support during bad times, and connecting with their readers across the miles through the magic of the Internet playground. Eloquence is escaping me at the moment, but I’m still going to try for a bit of the rest here.

Quilting has been in short supply here since the quilt day with Kristin, but with good reason: I’ve been working fast and furious this week to get a new website up and running for The ALS Association New Mexico Partner. I began researching ALS (amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease), when a family member was diagnosed with the disorder early in 2006. It’s really hard to be this far away, and not be able to see her or be with her, or help out if needed. It’s early days and my aunt is doing well, but I wish I lived closer to her. We purchased fabric together when I visited with them in 2005 for a quilt I would make for her and her husband (the quilt that became Stars in my Hand). I had already started work on the quilt, but after the diagnosis, I wondered if I could do more to make the quilt even more special than I already planned for it to be.

I decided to photograph parts of the quilt as it was finished to create a special collection of note cards, postcards, ornaments and treasure boxes for sale called Quilted Whispers, with proceeds to benefit the ALS Association New Mexico Partner. Hoping to reach more people about this special collection and the cause, I created the Quilted Whispers Contest, which you can still enter until the end of June, 2007, and a press release which, sadly, was never picked up by any newspapers as far as I know. At one point, I contacted The ALS Association to try to work with them to start a larger fund raising campaign involving quilts and quilters, somewhat like the Alzheimer’s Art Quilt Initiative created by Ami Simms, but The ALS Association declined my proposed effort.

I contacted The ALS Association New Mexico Partner earlier this year, and offered to donate my Web services to revamp their current website to give it a more professional look and user friendly experience, and they accepted. The site is finished now (but obviously, I’ll continue to make updates and changes as needed, for as long as they need me). It’s not necessarily helping my aunt directly right now, but it does help the overall effort in her area, and the site and everything The ALS Association New Mexico Partner does will be there for her when she needs it. Right now, though I wish I could do more, it has to be enough.

While I was working on the site a couple of days ago, I ran across an article on the ALSA National site about a very special song that’s available on iTunes, with all proceeds to benefit The ALS Association. The song was composed and recorded by Anna Huckabee Tull, who was compelled to create this lyrical message with a family member who has ALS. The song is playing on my computer right now and it makes me cry, it’s so beautiful and touching, and so deeply moving. Someday soon, I hope to be able to report that the efforts to eradicate ALS have been successful, but that day is not now. Until then, we’ll all keep doing what we can.

Go quilt! Your work gets better every day!
Nadine