Latest News

2009 SMA Angels Charity Ball, Savannah, GA

Fri, 06 Nov 2009 14:00:04 -0500

The theme of this year's fundraiser will be "Imagine" - imagine a world free of SMA.

2009 Fall Party, Richmond, VA

Fri, 06 Nov 2009 15:08:25 -0500

The 2009 FightSMA Fall Party is just around the corner! Join us on November 21, 2009 at the new, beautiful riverfront Boathouse at Rocketts Landing. Enjoy cocktails, hors d'oeuvres and dancing overlooking the James River and help fight Spinal Muscular Atrophy (SMA), the number-one inherited killer of children under the age of two.

Goddard School Vendor Fair Toms River, NJ

Fri, 06 Nov 2009 20:38:58 -0500

Join us as we get a jump on Holiday Shopping, share some laughs and support a great cause! Shop from vendors including Lia Sophia, Tastefully Simple, Avon, Tupperware, Beauty Spa, Party Light as well as assorted Purses & Insulated Lunch Bags!

Arizona FSMA Walk-n-Roll Scottsdale, AZ

Mon, 09 Nov 2009 17:20:19 -0500

Picnic Lunch and activities to follow the walk

Fight SMA Annual Conference, Washington D.C.

Mon, 09 Nov 2009 17:21:50 -0500

April 25-26 Researcher Conference
April 26-28 Families and Friends Conference

2010 Annual SMA Conference, Santa Clara, CA

Mon, 09 Nov 2009 17:53:27 -0500

Since 1988, Families of SMA has hosted an annual conference so that families can hear about the latest research, share the latest in disease management techniques and therapies and network with other families and professionals.

SMA, the leading genetic killer of children under the age of two, is typically marked by the degeneration of muscle movement including the muscles that control crawling, walking, swallowing or breathing. There are no approved therapies for the treatment of SMA, which affects one in every 6,000 babies. One in every 40 people carries the gene that causes SMA, indicating approximately 7.5 million carriers in the United States.

Researchers identify drug candidate for treating spinal muscular atrophy

Mon, 09 Nov 2009 18:03:19 -0500

Cold Spring Harbor, N.Y. - A chemical cousin of the common antibiotic tetracycline might be useful in treating spinal muscular atrophy (SMA), a currently incurable disease that is the leading genetic cause of death in infants. This is the finding of a research collaboration involving Adrian Krainer, Ph.D., of Cold Spring Harbor Laboratory (CSHL) and scientists from Paratek Pharmaceuticals and Rosalind Franklin University of Medicine and Science.

SMA is caused by mutations in a gene called Survival of Motor Neuron 1 (SMN1), resulting in a decrease in the levels of SMN protein in the motor neurons of the spinal cord - the cells that control muscle activity. Without the protein, these neurons degenerate, and infants born with the mutations progressively lose the ability to move, swallow, and breathe. There are no approved therapies for the treatment of SMA, which affects approximately 1 in 6,000 babies born in the United States.

Where does the SMA community stand in regard to progress with the SMA Treatment Acceleration Act?

Mon, 09 Nov 2009 19:56:34 -0500

FAQs about the SMA Community's Progress with the SMA Treatment Acceleration Act,

Families of Spinal Muscular Atrophy and Repligen partner to develop a treatment for SMA

Mon, 09 Nov 2009 19:59:32 -0500

Families of Spinal Muscular Atrophy (FSMA) announced today that it has entered into a groundbreaking exclusive license agreement with Repligen Corporation for the development of a potential treatment of Spinal Muscular Atrophy (SMA).

2008/2009 FightSMA Annual Report

Mon, 09 Nov 2009 20:34:06 -0500

Our annual report, The Good Fight, is a glimpse into the life of FightSMA: the children, the families, the researchers, and the friends who make the work we do possible. It is good work. It is a good fight. And, it will be won.

Multi-million dollar cooperative agreement for SMA drug development program

Mon, 09 Nov 2009 20:40:21 -0500

Paratek Pharmaceuticals (Boston, MA) and Families of Spinal Muscular Atrophy (Elk Grove Village, IL) announced today that a jointly funded drug development program for Spinal Muscular Atrophy (SMA) has been awarded a multi-million dollar cooperative agreement from the National Institute of Neurological Disorders and Stroke (NINDS).

The five-year cooperative agreement encompasses pre-clinical drug development up to the time of an Investigational New Drug (IND) Application to the FDA. The program is focused on developing a novel small molecule of the tetracycline family from within Paratek's propriety compound library. The potential for success of the drug candidate is evaluated at key stages of the development using quantitative go/no-go milestones that have been established in the agreement between Paratek and the NINDS.

SMA Treatment Acceleration Act Co-sponsor tally: House of Representatives – 56 Senate - 13

Mon, 09 Nov 2009 20:41:56 -0500

The SMA Foundation is pleased to announce that the total number of cosponsors for the SMA Treatment Acceleration Act has reached 56 in the House of Representatives and 13 in the Senate. If passed, the SMA Treatment Acceleration Act will:

Provide funding to support SMA clinical and research teams
Enhance the SMA Patient Registry
Provide federal coordination for SMA research and therapeutics development
Improve public and professional education and awareness regarding SMA

FSMA Greater NY Chapter Walk N’ Roll

Fri, 16 Apr 2010 14:36:18 -0400

FSMA Greater NY Chapter Walk N' Roll Saturday June 5th. 10am Long Beach BoardWalk, Long Beach, NY http://www.fsma.org/gnywalknroll2010

3rd Annual Macy's Shop for a Cause

Mon, 30 Aug 2010 15:24:54 -0400

Purchase a Macy's shopping pass for $5 and you can get up to 25% off your purchases for this one day only. 100% of every pass we sell will go towards Families of SMA.

Helping Hands Poker Tournament

Fri, 03 Sep 2010 15:13:31 -0400

Join Lolly's Wish for their first Helping Hands Poker Tournament to help raise money to "Improve the Quality of Life & Help Find a Cure" for all the families that are affected by SMA.

Saturday: November 6th
Location: 28730 Garnet Canyon Dr. Santa Clarita 91390

2010 Jerry Lewis MDA Telethon

Fri, 03 Sep 2010 15:16:07 -0400

First broadcast over Labor Day weekend in 1966 by a lone TV station in New York City, the unique event starring popular comedian Jerry Lewis quickly caught the public’s attention — and raised more than $1 million in pledges. Now, more than 40 years later, the show will be broadcast by more than 170 stations, assisted by approximately 250,000 volunteers across the country. Nearly 40 million people will see the show.

Tune in to WCVB TV 5 (Boston) on September 6th to see Athena support the Muscular Dystrophy Association.

12th Annual Hannah's Buddies Charity Classic

Thu, 06 Jan 2011 13:27:27 -0500

The 12th Annual Hannah's Buddies event will be held January 21st & 22nd, 2011 at Grand Cypress Golf Club and The House of Blues in Orlando, FL. Activities include a Golf Tournament with an awards reception, a dinner and silent auction with musical performances by bands such as Galactic, JB & Friends with John Bell, the Drive-By Truckers, as well as Nickel and the Polar Bears.

The 1st Annual Jazz n Jam

Thu, 06 Jan 2011 13:41:01 -0500

Help to develop a treatment and cure for Spinal Muscular Atrophy. This is the first annual Jazzercise event to fund research. Special guest Tim Roberts will be there to help pump it up! Children activities will include JR Jazzercise, face painting, a magician and more!

Sacramento, CA - Pathways of Promise presents Rockin' the Cure 2011

Mon, 31 Jan 2011 15:53:50 -0500

Elks Tower, Grand Ballroom

Saturday, March 5, 2011

Help us develop a treatment and cure for Spinal Muscular Atrophy

Why: To fund essential research in our race for a cure for Spinal Muscular Atrophy.
Cost: $65.00 - Online purchase through noon on Thursday, March 3rd, 2011
$75.00 - At event
Attire: Creative Cocktail, Business Casual.
Your ticket includes: Gourmet food, wine with dinner, dancing, live and silent auction

This event is for all those living with Spinal Muscular Atrophy and in honor of Luke and Meagan McWilliams.

If you have any questions, please contact Colleen McWilliams at 916-570-2770 or colleenmcwilliams@surewest.net.

Boca Raton, Florida - Jacob's Run, Walk & Roll to Cure SMA 2011

Mon, 31 Jan 2011 15:57:46 -0500

join us for a 1 mile fun run/walk
followed by lunch & family entertainment!

event schedule
Registration 9:30 - 10:15 am
Fun Run/Walk 10:30 am
Entertainment & Lunch 11:15 am

registration fees
$25 adults, $10 children, under age 2 free
Includes: official event t-shirt (guaranteed for first 400 participants), post run/walk lunch and all activities. You may pre-register online, by mail or you can bring your registration to the event.

Denver, CO - 10th Annual FSMA Evening of Hope Gala

Mon, 31 Jan 2011 16:04:50 -0500

The Plaza at the Denver Merchandise Mart

Saturday, March 12, 2011

Help us develop a treatment and cure for Spinal Muscular Atrophy.

The Evening of Hope Committee is preparing to mail out invitations to the Tenth Annual Evening of Hope Gala. If you have friends, family or other contacts that you would like to have receive one please contact Joy Spellman at spellmanfive@msn.com to have them added to the mailing list.

For more information, to make a reservation, or for sponsorship opportunities please contact Joy Spellman at spellmanfive@msn.com or (303) 918.6586.

Hanover, PA - Emmy's Crop for SMA

Mon, 31 Jan 2011 16:02:05 -0500

Old Parkville Fire Department Building

Help us develop a treatment and cure for Spinal Muscular Atrophy

Plenty of room to scrapbook and visit with friends
Light breakfast, lunch, dinner, snacks and drinks included
Vendors on site
Door prizes, Raffles, Silent Auction, T-shirts
Mini Zumba classes
Masseuse on site
Free scrapbook classes and best page contest

All proceeds go to the Families of Spinal Muscular Atrophy in memory of Emmy Rose Baugher who received her angel wings at six months of age on December 27, 2006. Don't forget to wear pink and chocolate brown to be included in a special door prize drawing.

If you have any questions, please contact Brandy Baugher at 717-965-5066 or emmyrosebaugher@hotmail.com.

Knoxville TN - Golf Tournament for Spinal Muscular Atrophy

Tue, 29 Mar 2011 14:22:47 -0400

Four person scramble.Great auction and raffle items. Tons of free food and drink. Prizes for winners. Fun for a great cause! Help us raise money to find a cure for Spinal Muscular Atrophy!!

Monday, April 25 1:00PM - 6:00PM

Gettsvue Country Club Knoxville, TN

Lansing, MI - Families of Spinal Muscular Atrophy 5K

Mon, 31 Jan 2011 16:26:57 -0500

Help us develop a treatment and cure for Spinal Muscular Atrophy.

You must register by April 15, 2010 to secure early registration fees.
Please note that T-shirts are only guaranteed for pre-registered participants. Additional t-shirts can be purchased for $12, please indicate the quantity and size.

Jerseyville, IL- Quarter Auction to benefit Spinal Muscular Atrophy

Tue, 29 Mar 2011 14:27:10 -0400

As you know, we raise money every year for Families of Spinal Muscular Atrophy. Our goal is to raise money until there is a treatment. Since we began in 1996, they have found the cause of the disease, stopped it in mice, and are now trying to find a safe way to treat humans.

This year we are having a Quarter Auction on May 6th at the K.C Hall. Doors open at 6 p.m. with the auction starting at 7. At a quarter auction you buy a... paddle for $5.00 with $4.00 going to the charity. There are approximately 20 vendors around the room who donate multiple items to be auctioned off. The bids are from 1 to 4 quarters, and if you bid, you hold up your paddle. They pull numbers until someone’s number that is raised is pulled. There will also be silent auction items.

Orlando, FL - 2011 Annual SMA Conference

Thu, 06 Jan 2011 13:37:08 -0500

Discover the MAGIC of the SMA Conference. Be a part of the most memorable and magical SMA Conference ever at the Walt Disney World Swan and Dolphin Resort in Orlando Florida.

Long Beach, NY - 7th Annual Walk-n-Roll to cure SMA

Thu, 06 Jan 2011 14:39:31 -0500

Visit the FSMA Greater New York Chapter to find out more informationa and recieve newletters about upcoming events planned for 2011

Climbing for Silas: Fundraisers to help 16-month-old boy with genetic disease

Mon, 20 Jun 2011 14:30:12 -0400

The son of Jackson Laboratory event manager Renee La Casse is seeking individual and corporate sponsors for his climbs of 25 mountains in Acadia National Park in Maine. The fundraiser begins July 2 when he climbs Parkman, Gilmore, Sargent, Penobscot and Cedar Swamp mountains (51/2-mile hike up Sargent, the highest at 1,373 feet, according to Gus) and continues with other climbs through July. It ends when he climbs Mount Katahdin July 31.

A "Berry Special Event for Li'l Ford

Mon, 20 Jun 2011 14:51:40 -0400

Friends of Ford will be selling delicious strawberry shortcakes for $3. All proceeds will go toward purchasing a special wheelchair for baby Ford Sniezek, who has been diagnosed with Type One SMA (Spinal Muscular Atrophy).

ESSO Rebecca Run for SMA

Mon, 20 Jun 2011 14:58:00 -0400

Help us celebrate our 10th anniversary this year! Join us on July 9th at the Esso Rebecca Run for SMA. Participate in the run, enjoy our amazing post run bbq and let the kids go wild at the face painting station

First Annual SMA Walk-n-Roll to Cure Tala

Mon, 20 Jun 2011 15:04:10 -0400

This walk is to honor my precious niece Tala. She is our angel. This walk is not only to raise money for FSMA but to raise awareness about this horrible disease. It would mean the world to my family if you all would come out and show your support and walk with us in honor of Tala.

Ride Away SMA - 7th Annual

Mon, 20 Jun 2011 15:08:03 -0400

Proceeds will benefit "Marshall's Miles" an organization dedicated to fighting Spinal Muscular Atrophy and providing assistance to it's victims and their families.

Benefit for Emily Rios with Spinal Muscular Atrophy

Mon, 27 Jun 2011 11:53:06 -0400

On behalf of Cross and Crown Church, we are requesting your attendance to a benefit event for Emily Rios. Emily was diagnosed with Spinal Muscular Atrophy at 10 months of age. Emily is now 3 years old and has overcome many obstacles. Our goal through this benefit would be to make available all the resources Emily needs to overcome this disease. You can make this goal possible by donating. All the proceeds will be utilized to continue to provide the best possible care available for Emily Rios.