There were two main reasons why I started the W.A.M. 5k.  First, I became a runner about eight years ago.  Over the years, I have run nine marathons, one 20-miler, six half-marathons and about a dozen 5ks.  Ever since I started running I have wanted to organize a 5k, but I didn’t know where I would hold it, where to start, or what the purpose of the race would be.  Part of the answer came in 2008 when the high school I work at built a new stadium with artificial turf.  Now that I had the where, I was looking for a purpose and I found it through one of my good friends who had two sons that were diagnosed with Spinal Muscular Atrophy.  I thought this would be a great way to help raise money for his family as they searched for a cure for their children.  My friend pointed me to Families of SMA as an organization that would use donations that the 5k collected to fund their mission of finding a treatment and a cure.  I now had my place and purpose, and then it happened.

On February 11^th, 2010, my friend’s youngest son who was diagnosed with SMA, passed away at the age of 21 months.  As devastating as this was and still is, I had a feeling this race had to take place.  With the permission of my friend and his wife, we moved forward to hold the race and name it after their son, William Anco.

Over the past two years, we have raised over $2,900 for Families of SMA and the Anco Family to help their other son, Ben, and his quest to find a cure!  We are now busy planning the 3^rd Annual W.A.M. 5k that will be held on May 5^th, 2012 at Chisago Lakes High School in Lindstrom, Minnesota.

Scott Buchkoski

Thank you Scott for all of your hard work in planning the William Anco Memorial 5k!  Through your dedication, you are helping to raise awareness and funds so that one day we will be able to find a treatment and a cure for Spinal Muscular Atrophy!

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

On September 24^th, 2011 a gospel concert was held at Immanuel Baptist Church in Lebanon, Tennessee in memory of our little girl, Alana Christine Whited.  We wanted to help spread the word about Spinal Muscular Atrophy to help others learn about this disease and the symptoms to look for in children living with SMA.  Our goal was to raise money to help other families who are going through what we did with our little princess. It is not easy and every helping hand or voice makes a difference. We want to keep Alana’s spirit alive and let her know how much we love her by helping Families of SMA.

Alana touched a lot of people with her warm smiles even through her sickness.  Several groups belonging to MSGMA (Mid-South Gospel Music Association) gave their talent and time and we truly appreciate all the hard work that everyone put in.  During the concert, a slideshow was shown in memory of our daughter to show how much joy she brought to us in only a short six months. Along with this concert, we have placed donation boxes with Alana’s picture, information on SMA and the link to Families of SMA’s website in local business’s during the Christmas season.  We also placed Alana’s Gift Registry page on our Facebook pages around the holidays and her birthday so that we could raise money for this cause. Through everyone’s kindness and generosity we raised $2,925 for Families of SMA!  We hope to do many more benefits in honor of Alana and continue to spread the word about SMA in hopes to one day find a cure for this disease.

Sincerely,

The Whited Family

Thank you to the Whited Family for your hard work in planning the gospel concert which helped to raise awareness and funds for Families of SMA.  Your dedication is inspiring hope that one day we will find a treatment and a cure for Spinal Muscular Atrophy.

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

Repligen received a holiday card and check from the family of Hugo Cordova from Miami, Florida. The Cordova Family was appreciative of Repligen’s efforts in developing treatments for Spinal Muscular Atrophy as their son Gabriel has SMA. They wanted to have the Research and Development team be “rewarded” with a $500 check to use for the team’s enjoyment.   The team decided that instead of spending the money on themselves, they would forward the $500 to the local Families of SMA Chapter and match it with a check from Repligen.

Thank you to the Cordova Family for their support of Families of SMA and their kind gesture in recognizing the efforts of the team working at Repligen.  Families of SMA would like to thank the Repligen Team for their generosity as well as all of the hard work they are putting in to trying to develop a treatment and a cure for Spinal Muscular Atrophy!

Click here to learn more about Repligen and their involvement in the Spinal Muscular Atrophy Drug Development Pipeline for Families of SMA.

By the time our daughter, Ella, was diagnosed with SMA Type II Mama Bracelets had existed for almost one year.  In that time we had raised money through bracelets and necklaces for several organizations including The Rett Research Trust, The American SIDS Institute, Little Friends, Inc. (Autism Awareness), Autism Speaks, and LUNGevity.

When Ella’s diagnosis was confirmed we immediately went to work creating and designing a bracelet collection for women, men, and children that would follow our product’s reputation of simplicity and style.  Our “Cure SMA” Awareness Bracelet Collection was conceived.

Through all sales of these bracelets we lovingly donate 30% of the proceeds directly to FSMA is support of the research for treatments and a cure.  Through the generosity of many people in our community and across the country we have raised over $2,000 for FSMA in less than 5 months!

Thank you to the Casten Family for your hard work and support of Families of SMA!  Your dedication to raising funds and creating SMA Awareness is incredible and you are inspiring hope in others that one day we will find a treatment and a cure for Spinal Muscular Atrophy!

To read more about Mama Bracelets, or to order your bracelet today, please visit www.fsma.org/mamabracelets or www.mamabracelets.com.

On October 28, 2011, the students of St. Agatha School in Milton, Massachusetts held a walk to benefit Families of Spinal Muscular Atrophy.  The students obtained pledges, then walked laps around the school for FSMA.

School staff member Michelle Tierney organized and coordinated the event that was held in honor of 8th grader, Aileen Farrell, SMA, type III.  Aileen and her sisters Anna, age 11, and Margaret, age 9, attend St. Agatha School as well.  Mrs. Tierney organized and coordinated all pledges, donations, student participation and volunteers for the walk. The children got a surprise when they were visited by Boston Bruins mascot, Blades, and former Bruins player, Bob Sweeney!  Blades and Mr. Sweeney took pictures with each classroom, signed autographs and even participated in the walk itself.

The St. Agatha School Walk for SMA raised approximately $10,000!  The Farrell family would like to express their deep gratitude to the caring administrators, teachers, faculty, parents and students of the school community who showed their support in a big way by helping to find a cure in the fight against SMA.  We wish to acknowledge the staff at the Boston Bruins Foundation who helped make the day extra special for all the participants.  Lastly, we would like to send a very special thanks to Mrs. Tierney for all of her hard work and effort to make this event so successful and FUN!

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

On December 17^th we were having a small Christmas gathering at our home. The idea started out when our home was finished being decorated. The lights, the tree and the decorations both inside and out, were finally finished!  Looking upon everything, we decided that it looked so nice that we should have friends and family over to enjoy being together for the holidays. After reading an update from the FSMA chapter, we thought of asking our friends and family to not bring anything such as food or drinks, but to make a small donation to FSMA. Our guests were truly generous as we raised over $1,300! Our first fundraising event was a success! Our family and friends want this to become an annual event and we are already making plans for next year. We are planning to have an “Open House” earlier in the season and hope to raise another generous contribution. We are truly appreciative to our family and friends for their continued support and generosity over the past years since our son was diagnosed with SMA Type III. We are truly blessed and keep hope in our hearts that there will be a cure in the near future.
Sal & Robin Morrongiello

Thank you to the Morrongiello Family for your hard work in planning this wonderful holiday event that not only raised funds, but also awareness for Families of Spinal Muscular Atrophy!

On Sunday, October 9, 2011, Team Reach for the Sky successfully completed the San Diego to Coronado Sharkfest swim!  All team members made it safely to shore.  And nary a shark was spotted in the process, although a few swimmers did report seeing a mean-looking halibut near the finish line!

Team members ranged in age from 11 to 58, and in swimming skills from former state record holders to “I just hope to finish the race” novices. Teammates Maggie Matthews, Mark Matthews, Brooks Bahrenburg, Chris Kellerman, Hannah Kang, and Francine Grimmer all earned medals by finishing in the top three of their age groups.

But the swim wasn’t about winning medals.  Our purpose was to have fun, finish safely, and raise money to help find a cure for Spinal Muscular Atrophy.

And that’s where you came in.

While planning the swim, we set a goal of 500 donors and raising awareness of SMA. So far, we’ve received 440 donations, and have raised $36,988.99 along the way.

On behalf of Team Reach for the Sky, thank you for your contribution to FSMA. One day, researchers WILL find a way to overcome this terrible disease, and your contribution brings us one step closer to the cure.

In his short life, Skylar had a profound impact on those who knew and loved him. We are grateful for your part in allowing us to honor his memory in such a meaningful way.

Wow – what a race, what a weekend, what a wonderful way to celebrate the life of Skylar Bahrenburg!

Families of SMA would like to congratulate and thank the Bahrenburg, Matthews and Amlicke families for their hard work and dedication in planning the event.  The response that was received from your family and friends is truly incredible.  The funds and awareness that you raised is inspiring hope that one day we will find a treatment and a cure for Spinal Muscular Atrophy.  Congratulations to all of the members of Team Reach for the Sky on successfully completing the Sharkfest swim!

Check out the Team Reach for the Sky video!

On Friday, September 2, 2011, the 7th Annual Grant Sheppard Memorial Scramble for SMA was held at Hickory Hills Country Club in Chilton, Wisconsin.  The golf outing was held on what would have been Grant’s 7^th birthday.  We are proud to be sending you the proceeds that may be used to suit the needs of the organization.  Enclosed you will find a check from the proceeds of the golf outing for $7,000.  In combination with the total raised on the website and other donations, the total raised in Grant’s memory is $9,000.

The day was our first rain out in seven years!  A terrible storm with over 80 mile per hour winds came in very quickly and trees were falling on the golf course.  We had to bring in all golfers to the clubhouse for their safety, but everyone still had fun at the silent auction and bucket raffles helping to raise money for Families of SMA.

Thank you for all that you do for the families dealing with Spinal Muscular Atrophy.  Together we will find a cure!

Scott, Lisa, Peter and Lily Sheppard

Thank you to the Sheppard Family for all of your hard work in organizing the golf event.  Your dedication and support of Families of SMA is truly appreciated!

Renee King, Grandmother to eight year old Kennedy Montoya, is the secretary of the Orange County Mustang Club in the County of Orange in California.  The club has three car shows a year and there is always a 50/50 Drawing for SMA.  Kennedy is the one to pick the winning ticket and present the gift to the winner.  The club raised almost $800 in its first two shows this year!  At the second show, the Surf City Garage Car Show in Huntington Beach, the gentleman who won donated the money back to Families of Spinal Muscular Atrophy.

Rickk and Autumn Montoya, Kennedy’s parents, also set up a table with information and sold baked goods to raise money.  Rickk said, “We feel we accomplished our mission of putting a face to the FSMA name.  For so many years now, the Orange County Mustang Club has been donating proceeds from their car shows, yet other than seeing Kennedy in attendance, they knew very little about the disease.  Well that has changed now.  Many of the members strolled by our Awareness table en route to Autumn’s treats and either asked a few questions or unexpectedly got an earful.”

Thank you to Renee, Rickk, Autumn, and all of the members of the Orange County Mustang Club for your continued support of Families of SMA and your dedication to raising funds and awareness in honor of Kennedy.

The United States Geological Survey Office in Baton Rouge, Louisiana has named Families of SMA as their annual charity sponsor!  Over the next twelve months, all employees will have the opportunity of donating through payroll deduction and participating in weekly lunch fundraisers!  Each Thursday, lunches will be sold for $7 and proceeds will be donated to fund the critical research and family support programs that will help find a treatment and a cure for Spinal Muscular Atrophy.  The first “kick-off” lunch was a success and we would like to thank all of the US Geological Survey Employees for their generosity and support of Families of SMA!