Spinal Muscular Atrophy (SMA) Blog by FightSMA

Don’t Forget: Rock’N Out for Isabella Is This Weekend

Posted: May 16th, 2012 | By: Staff | No Comments

Wednesday, May 16th, 2012

If you’re going to be in Central Virginia, don’t forget to stop by Cullen’s Cove in Mechanicsville on Saturday for Rock’N Out for Isabella! The two-part event will raise money for FightSMA’s goal of finding a treatment or cure for SMA. The schedule is below, so be sure to be there!

The sign is up and pointing the way to Rock'N Out for Isabella!

When: May 19, 2012
Where: Cullen’s Cove (6233 Mechanicsville Turnpike, Mechanicsville, Virginia 23111)
Details:

12Noon – 4pm: This portion of the benefit will be outside and will be all about the children. Included will be a bake sale, car wash, moon bounce, hot dogs, popcorn, snow cones, face painting, a DJ and MORE…..

5:00pm – 2:00am: This portion of the benefit will be inside! Enjoy an evening filled with raffles, gift basket giveaways, music from some of Richmond’s finest bands, adult beverages and most of all … the chance to make a difference.

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Categories : Spinal Muscular Atrophy Events

Videos From the 2012 FightSMA Annual Research Conference: Michael Calise

Posted: May 16th, 2012 | By: Staff | No Comments

Wednesday, May 16th, 2012

In the coming months, we’ll be releasing a series of interview videos that were recorded during the 2012 FightSMA Annual Research Conference. The videos will feature FightSMA board members, who are also SMA parents fighting against the disease, as well as prominent SMA scientists. These videos will give insight on just how close we are to a treatment or cure for spinal muscular atrophy, and just how much of a toll this child killer can take on a family. Below is the first of those videos, featuring FightSMA Board Chairman Michael Calise. Michael is also head of Corinna’s Angels / FightSMA Rhode Island.

A BIG thanks to Metro Productions for their hard work in creating these videos.

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Categories : Spinal Muscular Atrophy Videos

How to Help Us Fight SMA

Posted: May 2nd, 2012 | By: Staff | No Comments

Wednesday, May 2nd, 2012

In the days since the world learned about Avery’s Bucket List and particularly since her passing on Monday, we’ve had many, many people reach out to us and ask how they can help defeat the disease that took her from her family. Here are a few suggestions:

Donate and encourage others to give as well: Funding spinal muscular atrophy research is the quickest way to make an impact. Avery’s parents have asked that donations be made in Avery’s memory to support the gene therapy work of SMA researcher Dr. Brian Kaspar at Nationwide Children’s Hospital and The Ohio State University. FightSMA has been pleased to support Dr. Kaspar’s work. FightSMA can accept donations designated for Dr. Kaspar. Please include this notation when you make your gift in memory of Avery. To donate, please click here.

Raise funds: We’re not suggesting you rush out and start your own foundation. However, holding a bake sale or benefit yard sale can raise a good bit of money that can help scientists find a cure.

Raise awareness: This is the easiest way to help, and it doesn’t cost a dime. Even after all of the media stories written about Avery’s story, SMA is a largely unknown disease. Tell all of your friends about it and forward articles from FightSMA to them. ”Like” our Facebook Page and share our articles there. Retweet us if you use Twitter. Make sure everyone you know is aware of this child killer.

If you want to go a step further and hold more organized fundraisers or even start a FightSMA chapter in your area, please contact us. Help for learning how to fund raise can also be had through our Fighter Mom Program, which provides disease advocacy assistance.

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Categories : Featured

Thank You Avery

Posted: May 1st, 2012 | By: Staff | 29 Comments

Tuesday, May 1st, 2012

Avery Canahuati

FightSMA would like to offer our sincere condolences to Mike and Laura Canahuati on the passing of their precious daughter, Avery. Avery and her brave parents are an inspiration to all of us in the fight to defeat SMA.

Mike and Laura have asked that donations be made in Avery’s memory to support the gene therapy work of SMA researcher Dr. Brian Kaspar at Nationwide Children’s Hospital and The Ohio State University. FightSMA has been pleased to support Dr. Kaspar’s work and we would like to see the current goal of $365,000 achieved in honor and memory of Avery. Our fight is the fight that must be won:

“FightSMA has a 20 year tradition of funding cutting edge research including high throughput drug screens, clinical trials and gene therapy research, which it helped to catalyze in recent years by providing a significant investment to Dr. Kaspar and AAV gene therapy. We continue to work with leading investigators to find and fund the most relevant research to bring about a therapy for this devastating disease.”

–Dr. Chris Lorson, FightSMA Science Director

FightSMA can accept donations designated for Dr. Kaspar. Please include this notation when you make your gift in memory of Avery. To donate, please click here.

Click here to visit Avery’s blog.

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Categories : Spinal Muscular Atrophy Families and Friends

Meet Avery and her Bucket List

Posted: April 30th, 2012 | By: Staff | 16 Comments

Monday, April 30th, 2012

Everyone is talking about Avery. Avery is a beautiful five-month-old girl from Texas who has SMA. Her parents have created a “bucket list” for her, with things they want her to see and do before the disease takes her away. Their progress on the list is being chronicled on a blog started by Avery’s dad, called Avery’s Bucket List. At the end of each post on that blog, the family asks people to donate to FightSMA, for which we are eternally grateful.

Avery and her family at the ballgame (click the image to visit Avery's Bucket List blog)

In the last few weeks, the family’s efforts have gone positively viral, with attention coming from new and old media, including Good Morning America and Huffington Post. If you haven’t heard about Avery, we urge you to head over to her blog and take a look. The family is working to make sure Avery gets to experience as much as possible. The most recent items crossed off the list include visiting a baseball game, throwing out the first pitch, and getting to “shake hands with super hot baseball players!”

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Categories : Spinal Muscular Atrophy Families and Friends