New Wheels for the Byrd Household

I am thrilled to inform you that we accepted delivery of our new wheelchair accessible van yesterday.

We will be forever grateful to the Clara Abbott Foundation, who among the many requests for financial assistance from Abbott Labs employees selected ours to grant. Their generosity strikes us almost speechless and we feel forever indebted to them for such an expensive, lifestyle changing gift.

The decision over which vehicle to get was very complicated. The twins' wheelchairs are new models (Permobil K450) and are larger than many other types of chairs, and because of this we thought we would have to move up to a full size van in order to fit two of these large wheelchairs. In the end, Toyota came through for us with a new, larger size minivan.

We have the 2011 Toyota Sienna XLE with the Viewpoint Mobility Vision Auto Entry Conversion. It is the only minivan long enough for two wheelchairs of our size and wide enough for middle row captain's chairs for our oldest daughter, who is not in a wheelchair. Until Toyota unveiled this model a couple months ago, we were going to be forced to go with a full sized van, so we're thrilled that Toyota made the body a little bigger in the next model year. Coincidentally, our van is the first 2011 Sienna Vision conversion ever!





To summarize, here was the process we went through: we bought the van from a dealership in Detroit, and then it went back to the Toyota factor to be gutted. They removed all the rear seating, lowered the floor, relocated the fuel tank, and added an automatic ramp to the rear of the van along with a lot of electrical components (buttons, buzzers, alarms, remote switches). Then the van was shipped here to Phoenix to the Ability Center, who patiently customized the rest of the interior (wheelchair-to-floor locking mechanisms, for one) based on the measurements of our particular wheelchairs.












This process took about three months, which is actually a pretty good turnaround considering the vastness of the project, if you ask me. And this van is top of the line. There was no luxury spared. We are so, so lucky. I mean, it's really all about the kids and meeting their unique needs and with dignity, but it doesn't hurt that we also have been afforded such a gift that even the parents feel pampered!

July 2010 Update

Great news this month at the Byrd House:

1. We finally found a 1-story home to buy. We closed a few weeks ago and some determined workers are readying the house for the big move during the first week of August. Daily life with two power wheelchairs--oy! This should be fun!

2. Kyle has his powerchair now. Finally! After 13 months of applying and appealing denials and wheeling and dealing and praying, the boy has his wheels. We couldn't be more thrilled!

3. This week we were approved for a $53,000 grant to cover the cost of a wheelchair accessible van. We're working with the Clara Abbott Foundation and The Ability Center to iron out the details. We're hoping to have new transportation for the twins in the next few months. !!!

Never a quiet moment here. The kids keep us hopping, and the latest gene therapy and stem cell news keep us hopeful for a cure for Spinal Muscular Atrophy.

What a gift, and what a day!

A few weeks ago we were paid a visit by an old family friend--a friend we haven't seen since, well, before we were married, I think. This friend brought with her 5 tickets to an Arizona Diamondbacks game and gift bags overflowing with gifts for the kids. They got Dbacks t-shirts and baseball caps and photo frames and figurines--and Kyle even got a bat signed by (former) outfielder Eric Byrnes!

We went to the Dbacks v Cardinals game on Saturday night. It was the first baseball game for all of the kids, and boy did we have fun. Our ushers (who were just dolls to us!) allowed us seats in the handicap section and then they doted on the kids all night. They got "My 1st Baseball Game" buttons and "It's My Birthday" buttons (the twins' birthday is next week) and anything else they asked for. Kyle could scarcely take his eyes off the action on the field for two seconds, and Lauren could scarcely stop eating popcorn for two seconds.

We even met another SMA family there--grandparents with a good eye for spotting SMA symptoms were visiting Phoenix and struck up a conversation after noticing Kyle and Lauren. Their granddaughter, who wasn't there, is slightly younger than the twins, and their children will be at the FSMA convention next week in Santa Clara--if you are this family, feel free to contact me so that we can meet!

Photos from our outing:






We're not sure of the identity of the family who so generously gifted this outing to us, so until I find out exactly who to thank, I thought I'd document it here for everyone to appreciate. Many thanks, whoever you are. We had an absolute blast, and it will be an experience we'll all remember forever!

p.s. Kyle is not wearing the Dbacks shirt you picked for him, because "the men in the family" are apparently Cardinals fans. And let's just say that "the men in the family" went home sad that night. ;)

Tattoo, Anyone? Attention, Greater Los Angeles! :)

Saturday, June 12 in Pomona, CA will be a great day for Families of Spinal Muscular Atrophy!

ALL proceeds from that day will be donated to FSMA to help increase awareness of SMA, fund research, and assist SMA families.

Many thanks to Ink'd Chronicles for participating in such an event! This *almost* makes me want to get a tattoo. ;)

http://www.inkdchronicles.com/
Located in the Pomona Arts Colony
264 W 2nd St.
Pomona, CA 91766
909.622.5351

Two More Easy, Free Ways to Support SMA

The Spinal Muscular Atrophy community has two more chances to win big money in this month's Pepsi Refresh Everything online contest. The best news is that the two organizations begging for our votes are in separate monetary tiers, so a vote for one does not cancel out the other. Bookmark these, vote daily, and beg your friends to do the same!

Vote for Sophia's Cure Foundation for the big $250,000 Pepsi Refresh award by clicking here.

And then vote for Stop SMA for the $25,000 Pepsi Refresh award by clicking here.

We had so much momentum earlier this year when we rallied the troops and got Stop SMA to the #1 spot for the month of March! Let's do it again in May!

Vote everyday in May for SMA--oh yes, say that aloud and then congratulate me on my poetic prowess. And then, you know, go vote!

Going Bald to Save Babies!

Meet Barb Zahn. Her baby Lucy has Spinal Muscular Atrophy type 1. If Barb can raise $10,000 for SMA research and awareness programs by Lucy's first birthday on July 9, 2010, she will shave her head! (You should see Barb's hair today--it's beautiful.)

Watch her CNN iReport video plea by clicking this link.

Barb is $1100 towards her goal--check this out and consider contributing, or even just joining the Facebook cause and inviting your friends to do the same.

Filming our documentary

These are exciting times at the Byrd House. Our good pal and filmmaker, Marvin, is visiting this week to film a documentary on Spinal Muscular Atrophy. He's been here less than 48 hours but has already filmed interviews with our therapists and ourselves. He has yet to film other local SMA families and our doctors at Phoenix Children's Hospital.

We expect the documentary to ultimately last about one hour. The focus of the film is to attract attention to SMA and to highlight some of the Phoenix SMA community. It's been tough to film so far, as you might imagine--lots of tears, on both sides of the camera. But there's lots of good stuff, too, and of course the kids are bright beacons of happiness throughout it all.

Marvin expects post-production to take about six months, and then we're contemplating the viability of screening the film next year in a few cities where we have an abundance of SMA families and support. We have ideas to hold screenings in Baltimore and Phoenix, so far. It's too early to focus too much on that, though. For now, our focus is keeping to the week's filming schedule and getting Marvin back home to the east coast next week with all his equipment in working order so that he can get to work on editing.

Marvin's professional works prior to this project can be found on imdb.com.

A Facebook fan page is being developed for the film, and when it goes live, we'll let everyone know so that you can join.

If you have inquiries or suggestions or advice for us regarding this project, we're all ears. Email us at byrdsforacure@gmail.com.

Postcards for Satori!

Our virtual friend Melissa--a fellow parent of a kiddo with SMA--has a special request for anyone in the world who wants to participate. Her ten year old daughter, Satori, is scheduled for full spinal fusion surgery at the end of this month. (Spinal fusion surgery helps to correct scoliosis, which is a common problem in people with neuromuscular disease.)

They expect to be in the hospital for 1-2 weeks, and Melissa is planning a surprise for Satori: she's asking anyone and everyone to mail her a get well postcard to the hospital during her stay. There's been a very positive response from the Twitter and Etsy communities, and by the looks of it Tori is going to be bombarded with fun postcards from all the over the world to read while she recuperates!

If you would like to participate, find all the details in Melissa's blog. Please note, per Melissa's instructions, the postcards need to be carefully addressed to the children's hospital at UC Davis (details can be found in Melissa's blog), and the postcards shouldn't arrive to the hospital before March 31st.

We can't wait for Melissa to eventually post photos of all the postcards! You can also follow Melissa on Twitter and fan her Haut Totes page on Facebook.

Pepsi Refresh Challenge

Everyday in March we can vote for Stop SMA in the Pepsi Refresh Challenge. The prize is $250,000! All the money goes to SMA research. You do have to register (and provide your name and email address, etc), but then you can submit your vote everyday this month.

In case you didn't know--I know the good people over at Stop SMA. They aren't a nameless, faceless organization. They use the twins in their promo material, and we Tweet together regularly. This is good people--another family affected by SMA who weren't satisfied sitting around doing nothing about it. Please, PLEASE vote! Everyday in March!

At the moment, Stop SMA is in the #3 position--but only #'s 1-2 will be awarded the cash! Please help by participating!

Pepsi Refresh Project

Fight SMA

Here's an uplifting video clip from Dr. Alex Mackenzie of Fight SMA. It made my day. (if you're reading this from Facebook, please click "View Original Post" in order to see the video.)



Will any of our followers be attending the Fight SMA conference this year in Washington, DC April 24-26? It doesn't look like we will be attending, but I hope they get a great turnout.

Cassandra, alone, will represent the Byrd family at the FSMA con in June. Please pray for Chris during that time, as he will stay home and play the role of single parent to three children who do not know the definition of "indoor voices". Also? They do not understand the concept of "sleeping in". May the force be with Chris during that difficult time.

SMA Research Update and Stem Cell Therapy

The amount of information I'm seeing out there regarding SMA research has just been exploding over the past year. If you have an interest in SMA research--or stem cell research in general, even--read on. I've tried to highlight the most interesting things that I've noticed lately, but surely for every one I see there are a dozen more exciting studies and papers that I am missing.

January 2010 saw the publication of a German study using lab mice with SMA. The drug is a potential treatment, not a cure, but the researchers seem to think it could be better than CarniVAL, which the twins are currently taking on an investigational basis. The drug is called Saha, and it's actually already on the market for the treatment of cancer, which makes it much easier for us to get our hands on if it's eventually found to be effective in increasing strength in our SMA kids.

Also biotech companies Repligen, deCODE Chemistry, and Invitrogen (and others?) continue to study quinazoline. This drug looks very promising and has "prolonged survival significantly" in SMA lab mice. Quinazoline is a new drug, and so is not currently on the market for any other indications.

Both of these drugs are in the pre-clinical stages of research, which my personal clinical research expert in the next room here tells me means that the research firms involved still have to apply to the FDA to begin their human trials. If their applications are approved, human trials could start in anywhere from two months from now to five years from now. Still, it's nice to know that someone is doing something, right?

My other interest is around U.S. stem cell trials in humans. As everyone knows by now, it took Barack Obama exactly 43 days in office before he reversed the embryonic stem cell research funding ban last year. Like it or hate it, the ban is in fact lifted, and federal dollars can now be used to support some heavy duty stem cell research.

I like it.

SMA is one of the conditions being seriously considered for stem cell treatment here in the U.S. It's been done in other countries, but documentation of these cases is nearly non-existent and what is out there is entirely anecdotal. It's hard for me to wrap my mind around the thought process behind injecting a child with stem cells, but not documenting or publishing the procedure and not having any before/after metrics to even show if the stem cells worked at all whatsoever. I certainly don't judge the families who have chosen to go this route--if you search my archives here, you'll see that if I'd had $50,000 to spare last December, I would have already been to China and back. Twice. Literally. The parent of a child (or children, heh) with SMA is a desperate parent, to be sure.

Here is a basic primer, sort of a Stem Cell Research 101.

So, even though embryonic stem cell therapy on humans has been performed elsewhere, it's not been done in the U.S. or done under the strict regulations of the good old Food & Drug Administration. I bet someone out there has some harsh words regarding the inefficiencies of the FDA, and while I'd love to hear your arguments, that's not really my agenda. Instead, I want to highlight some of the really amazing progress being made here in the U.S. to advance stem cell trials to human subjects. If we're smart, we'll all buy stock in these companies.

California Stem Cell and UC Irvine are planning their human trials for a motor neuron replacement therapy, derived from stem cells, on SMA type 1 patients to occur sometime this year. The Families of SMA have invested in this project over the years, and I can't wait for more information to become available on this trial. For SMA families, if you have heard of Dr. Hans Keirstead, this is the trial in which he is involved.

Geron, a San Francisco based firm, is planning to begin human trials on victims of spinal cord injury in 3Q 2010. According to their product pipeline, Geron is focusing on researching the use of human embryonic stem cells (hESC) in not only spinal cord injuries but also heart disease, cancer, and even diabetes.

This month, Maryland-based Neuralstem announced a human clinical trial at Emory University for ALS patients. The trial involves injecting human embryonic stem cells into the spinal cord, and the first patient has already received treatment. The researchers emphasize that they expect this only to slow the progression of the disease, but that it is not a cure. One notable fact is that it has taken Neuralstem only four months to go from FDA approval to their first injection of stem cells.

What do you think about any of this? Or if you know of something important that I've missed, share that, too.