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.

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

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.

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.

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!”

Julie and her Family (click for a larger version)

Our latest FightSMA Featured Family is another international one.  We were contacted by Julie Duong, a lovely young woman from Sydney, Australia, who wanted us to share her story:

My name is Julie. I’m 20 years old and I’m from Sydney, Australia. I have SMA type 2 and currently in my third year at university studying Psychology. I love travelling, meeting new people and keeping my life busy as possible.
This picture [to the right] is my family on one of the many trips we go on. I am so thankful for everything they do for me. Even though kids like us may seem a little unappreciative sometimes, we are always so grateful for the support we have. So thank you to all the wonderful parents we have.

Thanks so much to Julie for contacting us. SMA families need to stick together, because there is much strength in numbers.  It’s good to hear the Duongs are so close!

If you’d like to be a FightSMA Featured Family, just click here and sign up!

Isabella

We have another fantastic local fundraising event for SMA coming up soon!  The 2012 Rock’N Out for Isabella will be held in Mechanicsville, Virginia (just minutes from Richmond) and will benefit FightSMA’s goal of finding a treatment or cure for spinal muscular atrophy.  This is the second year for the event, which is organized by Stephanie Jackson.  Stephanie lost her granddaughter, Isabella, to SMA.  Here are the particulars:

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.

If you’re going to be in the area, be sure to come by!

Elliot Androphy, M.D.  -  Indiana University School of Medicine

Nicholas Boulis, M.D.  -  Emory University School of Medicine

Arthur Burghes, Ph.D.  -  Ohio State University

Barrington Burnett, Ph.D. –  National Institutes of Health

Eleanor Donnelly, Ph.D. -  Emory University School of Medicine

Allison Ebert, Ph.D. -  Medical College of Wisconsin

Faraz Farooq, Ph.D. -  Children’s Hospital of Eastern Ontario Research Institute

Kurt Fischbeck, M.D. – National Institute of Neurological Disorders and Stroke

Jacqueline Glascock  -  University of Missouri

Brian Kaspar, Ph.D. -  The Research Institute at Nationwide Children’s Hospital

Rashmi Kothary, Ph.D. -  Ottawa Health Research Institute

Adrian Krainer, Ph.D  -  Cold Spring Harbor Laboratory

Christian Lorson, Ph.D.  -  University of Missouri-Columbia

Alex MacKenzie, M.D., Ph.D. –  Children’s Hospital of Eastern Ontario Research Institute

Umrao Monani, Ph.D. –  Columbia University

Lyndsay Murray, Ph.D.  -  Ottawa Hospital Research Institute

Nikolai Naryshkin, Ph.D.  -  PTC Therapeutics

Marco Passini, Ph.D.  - Genzyme Corporation

Sergey Paushkin, M.D., Ph.D.  -  SMA Foundation

Livio Pellizzoni, Ph.D.  - Columbia University Center for Motor Neuron Biology and Disease

John Porter, Ph.D. –  National Institute of Neurological Disorders and Stroke

Charlotte Sumner, M.D. – Johns Hopkins University

Kathy Swoboda, M.D.  - University of Utah, School of Medicine

A.  Gary Todd, Ph.D. -   Indiana School of Medicine

Bahar (click for a larger version)

Bahar (which means spring in Persian) was born in spring, 2007. She was very healthy and active at the first, but gradually she lost her strength and doctors diagnosed her disease as SMA when she was 8 months exactly on our anniversary day.

She was so smart and kind and patient. She passed away 2 years ago when she was 18 months, while she was dancing and listening to her favorite music and I was driving and I supposed she felt sleep but the sleep was forever.

(click for a larger version)

Last year we immigrated to Canada and we don’t have any child yet. We miss Bahar always.

Thanks so much to Najmeh for contacting us and sharing about Bahar.  She was a precious girl and now the entire SMA world knows her story.

To read about previous FightSMA Featured Families, click here.

If you’d like to be a FightSMA Featured Family, just click here and sign up!

The Peppers Family (click for a larger version)

Please welcome our newest FightSMA Featured Family.  This time we’re highlighting the Peppers family from Cleveland, Ohio.  Michele Peppers wrote in to us about their son, Maxwell:

Maxwell is the love of our life. He is 2 years old. Maxwell is the fourth child to be diagnosed with some form of SMA in his mommy’s family. He has a cousin who is 19 living with SMA type II. Maxwell was diagnosed with type II SMA in July of 2011.

Maxwell Peppers

We are still transitioning with our new life. Maxwell is in the process of attaining power and manual mobility. He loves Toy Story and Cars movies. Maxwell is a little social butterfly and captures everyone’s heart he comes across. He has that charm. We pray daily for a cure of SMA. It has definately been a factor in our family for years. We cherish everyday, and are thankful that Maxwell was given to us.

Thanks so much to Michele for contacting us and sharing about Maxwell.  He’s a beautiful boy, and we’re sure anyone who meets him does fall in love!  To read about previous FightSMA Featured Families, click here.

If you’d like to be a FightSMA Featured Family, just click here and sign up!