Our now two year old daughter Kherington was diagnosed with SMA Type II last January. This summer many friends got together and held several benefits in her honor. The people who have shown support were named “Team Kherington.” I believe there were five benefits held by different groups of friends and family from April through August. Since her diagnosis is so new we are still on waiting lists for financial support so these benefits have helped us purchase a used van, put a ramp on our house, pay for part of her wheelchair as well as many of the other small things we need daily. We were able to attend the conference at Disney this June, (and can’t wait until you have it there again by the way), and we learned a lot of great things.

All together, we are sending you $2,175 from the money raised by Team Kherington. We appreciate everything Families of SMA does and know that you will put our money to good use in finding things to help all families with Spinal Muscular Atrophy and supporting all of us along the way. Thanks again!

Brandon, Melissa and Kherington Shippee
Janesville, WI

Ford Sniezek was diagnosed with Spinal Muscular Atrophy Type I on February 3, 2011 at 4 months of age.  Since his diagnosis, his family rallied around him in an effort to raise money to offset Ford’s medical expenses as well as raise as much awareness and funds to SMA research as they could.  Many members of Ford’s family as well as friends joined together in organizing fundraisers which all took on the name “Fight for Ford”.  These fundraisers were held to cover Ford’s medical expenses not covered through insurance as well as to provide money to Families of SMA which would be supporting Dr. Kaspar’s Gene Therapy Program.

Ford’s Aunt Jenn and Grandfather Fran held a fundraiser called “Fight for Ford, Man vs Machine” on September 24^th, which through many blessings turned out to be a beautiful day after the forecast called for rain and more rain.  This fundraiser was held at Moraine State Park and featured an auction, music from a live band, food, games and even an appearance from precious Ford.  Also this event featured Ford’s grandpa racing a motor boat in his kayak.  This event was very successful and many asked for it to become an annual event.

The very next day, September 25^th, Ford’s other Aunt Meghan held a “Fight for Ford Spaghetti Dinner” in the state of Rhode Island at the Warwick Volunteer Fire Hall.  A large crowd came to eat spaghetti and have a great time. This event also featured an auction and raffles as well as a DJ, games for the kids and clowns. There was also a card making station and these cards were sent to FSMA to be placed in the newly diagnosed care packages.  The Sniezek family was extremely grateful for the hard work put into this event which raised so much awareness.

Friends of Ford’s family (the Beachem’s, Plukard’s and Voland families) also wanted to show their support and organized a Corn Hole Tournament on October 10^th at a local sportsman club.  This event featured not only the corn hole tournament, but also food donated by a local market, bake sale, raffle drawing and auction.  Ford’s dad was able to attend this event to express the family’s gratitude for all the community’s love and support.

Finally on October 22^nd, Ford’s Grandparents Rev. Tom and Dee, along with other family and friends from Erie, PA also held a Fight for Ford Spaghetti Dinner at Lakeview Community Church.  Many families and community members enjoyed food, drinks and desserts.  This event also featured an auction and another card making station where cards of encouragement were again made for newly diagnosed families.  Also, Ford and his parents were able to Skype at this event.  The Sniezek’s were so excited to have been able to express their thanks for all those who came out to the event and enjoyed sharing Ford’s story with a local News station.

The Sniezek’s have been extremely blessed with so much love and support from their local community as well as family and friends all over Western PA and other states.  No one that the Sniezek’s know had ever heard of SMA until their son was diagnosed. Through all of these events, thousands of people are now aware of Spinal Muscular Atrophy.  Thanks to the efforts of family and friends, a total of $15,000 was raised in honor of Ford, with $1,500 going to Families of Spinal Muscular Atrophy.  The Sniezek’s and their families will continue to make it their goal to raise as much awareness and funds for SMA as they can so that soon a cure will be found!  The Sniezek’s will also continue to trust God and thank him daily for providing for Ford’s every need.

Sincerely,

Kayla Sniezek

To see more pictures from the Fight for Ford events, please visit our Flickr page!

When my friend Kate emailed to say that her newborn baby girl Ciara Rose Van De Loo had SMA, an internet search of the acronym brought about a wave of sadness. Ciara was just 10 months old before she passed away on April 26, 2011 due to the disease. In order to help find a cure for SMA, we decided to get involved in fundraising.

On October 15, 2011, Tom and I along with Maureen Kennedy (Tom’s Aunt) helped to support Families of SMA by running/walking in memory of Ciara at the Baltimore Running Festival.  Even with a late start, we were all able to cross the finish line in one piece.  In addition, we met our goals to raise awareness of the disease and raise funds to help families affected by SMA.  We set up a gift registry on the FSMA website and asked family, friends, and co-workers to donate to our cause.  It’s a great fundraising approach for those who are new to fundraising and we’re excited to say that we received $705 in donations!

Many thanks to the generous people who donated to Families of SMA and supported us throughout our training.  In addition, a special thank you to the Van De Loo family for sharing their lives with us.

Kathy Krispin

Congratulations to Kathy, Tom and Maureen for participating in the Baltimore Running Festival!  Thanks to all of your hard work, you are helping to inspire hope that one day there will be a treatment and a cure for Spinal Muscular Atrophy.

This July, the 5^th Annual Race 4 Grace was held in conjunction with RAGBRAI (The Register’s Annual Great Bike Ride Across Iowa).  The Race 4 Grace Team for RAGBRAI has been riding together since 2007.  Team members include family, friends, relatives and community members of Grace Nelson who have learned about Spinal Muscular Atrophy and are dedicated to helping find a treatment and a cure for the disease.  This year, hundreds of family and friends supported the team through generous donations.  Anyone who donated received a Race 4 Grace t-shirt and in turn, helped spread awareness as all of the team shirts had the message “Help Fight SMA”  on the back.  In total, we were able to raise$3,427.59 for Families of SMA!  Thank you to everyone who participated in the race and donated to the event!  We could not have been as successful without your support!  We are already looking forward to the 6th Annual Race 4 Grace in 2012!  We will be working hard throughout the year to recruit even more riders for next year!

Nic and Michelle Nelson

Sioux City, IA

Thank you to Nic and Michelle as well as all of your family members and friends who have made this event a success!

To see more pictures from the event, please visit our Flickr page!

Bella’s Benefit for SMA was a huge success. Thanks to everyone who participated, whether it was purchasing raffle tickets for the beautiful quilt, or coming to the comedy event held at The Gold Room. We were able to raise just over $1,700 and are excited to announce that Bernie Schwab was the winner of the quilt! Congrats Bernie!  A special thanks to Martin’s Point for donating $500 to support the mission behind Bella’s Benefit. A lot of my goals are now becoming a reality.  I have always wanted to be able to help other families like myself, with newborns being diagnosed with Spinal Muscular Atrophy. These families need a lot of support, not just physical, but monetary as well and Bella’s Benefit is now able to do this. A good portion of what was raised will be sent to Families of SMA, a nonprofit organization supporting families affected by SMA and funding research leading to a treatment and eventually, a cure for Spinal Muscular Atrophy.

Bella’s Benefit plans on hosting some other fundraising events, including another comedy event in the spring thanks to the support we received during our first event.

A huge thanks to the Sliter Family for hosting this event for Families of SMA!

The 1st Annual 18 for Emerson Charity Golf Tournament was held on August 29^th, 2011 in Prior Lake, Minnesota to raise money for Families of SMA in their efforts to find a treatment and a cure for Spinal Muscular Atrophy.  We had 74 golfers sign up and participate, along with more than 60 people who just came out for the dinner and auction.  In total, we raised over $32,000 for Families of SMA.  The guest of honor, Emerson, was in attendance doing her best to avoid the crowds, but still had fun riding around the course in the golf cart.  Emerson’s parents, Matt & Deb Chambers, were thrilled with the event’s total as well as how much fun everyone had at the inaugural event. We have already begun planning for our 2012 event and hope to raise more than $50,000 next year!  Thank you to everyone who came out to support our event.

To see more pictures from the event, please visit our Flickr page.

The annual reunion of the Wannabe Charity Golf Tournament was held in Lake Tahoe this year, from August 4th-6th.  The event always begins with an “Opening Ceremony” and ends on the last day with “Closing” which hosts a variety of prizes, awards, announcements of winners, and pictures of the many “teams”.  The tourney is fashioned somewhat like the Ryder Cup with two teams.  They are “Blue” and “White”. This year there were 32 players.  There is always a good amount of bantering back and forth…. before, during, and after the event!

The first golf round was a 2-Man Best Ball, with 18 holes played at the Old Greenwood course, and then another nine was played as a 2-Man Scramble.  On Saturday, individual match play for 18 holes was played at Gray’s Crossing.  “Blue Team” was the winner this year, and “White” will be scrambling to pick up their game by 2012.

The other teams are the “Red Team” which is composed of mothers and girlfriends.  There is a “Yellow Team” which is all the kids, and there is even a “Green Team” proposed for next year for any person (male, female, or kid) not competing in the golf, who would like to hike, bike, canoe, or enjoy the nature that always surrounds us.  It is TRULY a family and friends event.

Besides the golf and the fun for everyone, we have players and companies that sponsor holes, and we have a hole-in-one contest.  This year we sold ball markers, team polo’s, t-shirts, and accepted general donations.  We had a silent auction, which has been a great addition as a money-maker.

Our tournament took on the feature of becoming a charity in the year 2004, after it was known to all of our players that one of our families had a son who was diagnosed with SMA.  It just felt like the right thing to do for all involved.  Our “angel” Skylar Bahrenburg is never far from our thoughts as we reunite each year, with a purpose greater than ourselves.

To see more pictures from the Tournament, please visit our Flickr page!

I am a teacher at Stonegate Elementary School and my son, Cody, lost his battle with SMA in 2008.  This year Stonegate held its fifth annual Once Upon a Cure fundraiser event on June 3^rd and donated all of its proceeds to SMA.  It was a day filled with a lot of fun activities.  Our theme this year was Jungle.  Each classroom chose a children’s book with a Jungle theme for their booth activity.  The children raised money by getting sponsorships for well-children or those battling for their health in some way.  The names of those children were placed on storybook signs around a common area across from our school where the event was held.  Students took turns walking to music from a DJ, working in the booth their class provided, or participating in the different activities at the booths.

I am very please to mail you these checks for $6,284.  We couldn’t have done it without all the support of our staff, parents and students!

Sincerely,

Rhonda Munz

To see more pictures from the event, please visit our Flickr page!

We had our 4^th Annual Cure SMA: Run, Walk-N-Roll honoring Seth Gilley (SMA, Type II) on May 7, 2011 at the Stephenville City Park.   It was a big success, raising $12,259 for Families of SMA.  It was a beautiful day enjoyed by over 350 people.  Following the 2 mile fun run/walk, we had live music performed by a local Christian band, 100-Watt Witness.  The children enjoyed visiting with Sparky and our local fire department that attended.  There was also face painting, popcorn, bounce houses and a water slide.  New this year, our local Tarleton State University Therapeutic Horse Back Riding Program (T.R.E.A.T) provided a petting zoo and horse back rides.  The silent auction was very successful and even more special this year because Debby Ryan (AKA “Bailey” on The Suite Life on Deck) donated autographed pictures, DVDs, and clothing worn on the show.  Debby is a cousin to Seth, and during a special phone call from her in April this year, she said she wanted to help our cause by sending some items for the auction.  She was so sweet and we are so thankful for her support and kindness!  The event ended with a hamburger lunch provided by donations from local businesses and cookies from Seth’s church family, Graham St. Church of Christ.

It was a wonderful day!  Thank you to all that participated and especially to the SMA families that attended.  A huge “thank you” goes out to our small community of Stephenville and to our wonderfully supportive family and friends, for loving us and for continually wanting to support efforts in finding a cure for SMA.

Chad and Lacy Gilley

Stephenville, Texas

To see more pictures from the event, please visit our Flickr page!

The 2nd Annual “Laugh Away SMA” comedy showcase presented by Stop SMA took place on Saturday, August 6^th, 2011 at the Muse Center on the Rankin Campus of Hinds Community College.  This family friendly event is a unique way to spread the word and gain support of Spinal Muscular Atrophy research funding.

This year the event starred nationally renowned comedians Henry Cho and Brian Regan, two incredible entertainers and compassionate individuals.  This was Henry’s second year to participate and he was instrumental in recruiting Brian to perform.

When asked by Jeff Horton, President of Stop SMA, how he would feel about Brian Regan performing at Laugh Away SMA, Henry responded,  “There was no doubt that this year was going to be amazing!”

With 1,450 in attendance, the night began with a check presentation to Gary Bassell, Ph. D. of Bassell Labs at Emory University in Atlanta.  Stop SMA has partnered with Families of SMA, each funding half of the $140,000 needed over the next two years to investigate the effects of SMN on mRNA transport and local protein synthesis in motor axons. This important project will help gain insight into the mechanisms leading to specific motor neuron degeneration in SMA, paving the way to the development of new therapeutic strategies for a cure.

Dr. Bassell and Families of SMA President, Kenneth Hobby, were on stage for the presentation and spoke to the audience about the importance of supporting research for SMA.  Both gentlemen were very inspiring in their words about this disease, the progress that is being made and the “enormous hope” in finding a treatment.  Dr. Bassell conveyed how hard scientists are working in his lab and the “new spirit” they received from knowing about the Laugh Away SMA event.

The night continued with hysterical performances by Henry Cho and Brian Regan.  As Henry took the stage, the audience came to their feet with applause in appreciation for all of his work to help Stop SMA.  Henry laid a solid foundation for Laugh Away SMA last year and many people returned knowing it was going to be a quality event.  Laughter filled the venue and cheers echoed as Henry left the stage and Brian began his set.  The laughter did not stop until late into the night.  Both Brian and Henry stuck around after the show to visit with sponsors, family and friends of Stop SMA.  There are no words big enough to describe the night.

The room was full of passion, encouragement, love and faith that we will have the answers soon.  It our hope that Laugh Away SMA will get us to that realization a little faster.  “A cheerful heart is good medicine…” Proverbs 17:22
To see more pictures from the event, please visit our Flickr page!