Gwendolyn Strong Foundation and Santa Barbara Wealth Management Firm Join Forces to Raise Funds and Awareness for Spinal Muscular Atrophy Research

August 22, 2012

Press Release | August 22, 2012

Mission Wealth Management, LLC aims to raise $10,000 towards research for a cure for spinal muscular atrophy (SMA) with the Gwendolyn Strong Foundation (theGSF.org) at the Santa Barbara International Marathon on November 10, 2012.

SMA is the number one genetic killer of infants and young children. Currently, there is no treatment and no cure to help children suffering from this degenerative disease which hinders their ability to walk, stand, eat, speak, breathe, and swallow.

In fact, the National Institute of Health (NIH) has identified SMA as a “model disease” because any advance in SMA genetic research has the potential to directly impact the treatment or cure of more than 600 other diseases, including muscular dystrophy, Parkinson’s disease and Alzheimer’s disease.

Mission Wealth Management is joining Team GSF and their clients, the Strong family, to help raise money for research towards a cure. “In working with the Strong family with their personal financial planning, we became aware of their mission with the Gwendolyn Strong Foundation,” said Seth Streeter, Co-Founder and President of Mission Wealth Management, LLC. “We were so moved by their tremendous passion and commitment that we wanted to show our support by participating in the upcoming Santa Barbara International Marathon to help raise funds and awareness for this most worthy cause. We invite the whole community to join us in what will be a very special day.”

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Win One for FDR — and the Wheelchair Warrior in Your Life

July 26, 2012

Huffington Post | July 24, 2012 | By Don C. Reed

One recent night in Washington D.C., I saw two statues of Franklin Delano Roosevelt: one was huge, capturing the outsized spirit of the man, a green-bronze cape sweeping around him. The second was more accurately life-sized, showing a small wheelchair (then made of wood) so that you realized what the man had to endure, as he fought to lead America.

Both statues were accurate.

Franklin Delano Roosevelt was America’s only paralyzed president. He lost the ability to control his lower body due to polio, and stayed paralyzed till the day he died.

But he also performed heroically, accomplishing perhaps more than any able-bodied president in our history.

Through the crushing darkness of the Great Depression, FDR and the Democratic party wove America a safety net.

Social Security: different sections which attempted to protect the old, the poor, the sick and the unemployed ;

Securities Exchange Commission to regulate the uncaring greed and cruelty of Wall Street;

The Tennessee Valley Authority, which converted devastating floods to useful hydro-electricity;

These and much more were all made possible by that man in the wheelchair.

I propose we honor FDR– or another wheelchair warrior in your life.

There are roughly 3.3 million Americans in chairs, so chances are you know someone on wheels.

For me, it’s easy. I have numerous wheelchair warrior heroes. Christopher Reeve, of course, the paralyzed Superman who made it seem so natural to take on a medical condition incurable since the dawn of man.

And people you might not know, like Karen Miner and Fran Lopes, who for almost two decades have work quietly behind the scenes to raise money for research for cure.

But my personal pick is my son, Roman Reed.

The first night after his college football accident, when he was lying in bed with his athletic career suddenly ended — he asked for a banner to be made, to hang over his bed, reading: “I CAN, I WILL, I SHALL!”

That’s Roman, and he is still the same today. In the 17 years since his neck was broken, he has never wavered, never ceased believing in the possibility of cure. He looks beyond the confines of his own self, so that the struggle of a little girl named Gwendolyn Strong, paralyzed from Spinal Muscular Atrophy, is immediate and vital to him. He knows we are in this fight together, to win or lose.

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theGSF Launches First-Of-Its-Kind, Free iPad Communication App For Those With Limited Movement

February 27, 2012

theGSF Launches First-Of-Its-Kind, Free iPad Communication App For Those With Limited Movement

Press Release | February 27, 2012

Santa Barbara, CA — February 27, 2012 — The Gwendolyn Strong Foundation (theGSF), a Santa Barbara-based nonprofit launched “Say Hi! AAC” (Say Hi!), a first-of-its-kind augmentative and alternative communication (AAC) iPad app with the aim of opening the world of communication for those with severe physical disabilities, limited movement, and/or challenged dexterity. The unique app allows the user to communicate wants, needs, emotions, etc. via the iPad without ever physically touching the iPad touchscreen. Say Hi! is available for free in the Apple App Store.

Simple by design, the Say Hi! iPad communication app is completely customizable to suit the specific needs of the user. Once installed on the iPad, the user can create communication pages with boxes of words, phrases, images, and recorded sounds. Say Hi! requires the use of an iPad, which displays what the user would like to communicate, and two additional iPod Touch or iPhone devices. The two additional devices wirelessly connect to the iPad with one iPod/iPhone device acting as the “mover” and the other as the “selector.” The “mover” allows the user to move between customized boxes on the iPad communication app and the “selector” allows the user to select the desired box and “say” the associated word or phrase. Utilizing these connected devices in unison, the user can navigate the Say Hi! iPad communication app with almost no physical movement. Nothing like this currently exists.

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Gwendolyn Strong Foundation Granting Fifty iPads to those with Spinal Muscular Atrophy (SMA)

January 10, 2012

Gwendolyn Strong Foundation Granting Fifty iPads to those with Spinal Muscular Atrophy (SMA)

Press Release | January 10, 2012

SANTA BARBARA, CA — January 10, 2012 — The Gwendolyn Strong Foundation (theGSF), a Santa Barbara-based nonprofit organization dedicated to increasing global awareness of Spinal Muscular Atrophy (SMA), the #1 genetic killer of young children, and supporting families impacted by SMA and other life-altering conditions, launched its newest initiative called “Project Mariposa”. Project Mariposa has a simple mission: to make the world more accessible to those with severe disabilities through targeted technology product grants.

The program will initially focus on granting iPads to those impacted by SMA. SMA is a degenerative disease that causes weakness and wasting of the voluntary muscles. Cognitive ability is never hindered and those with SMA are bright in spite of their failing bodies. The iPad, coupled with the growing application library that accompanies them, are literally life-changing in assisting with communication, education, and independence. theGSF has secured funding for the initial fifty (50) iPads and will be announcing one (1) grant recipient per week for fifty (50) weeks beginning February 3, 2012.

“The iPad is opening up new avenues that were previously impossible,” said Victoria Strong, theGSF co-founder. “It’s large screen size, light weight, portability, and featherlight touch screen make access to education, entertainment, and independence possible and in some cases it is literally allowing children to communicate for the first time in their lives. Its impact is truly incredible.”

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theGSF and FightSMA Award $100,000 Spinal Muscular Atrophy Research Grant

December 16, 2011

theGSF.org | December 15, 2011

The Gwendolyn Strong Foundation (theGSF) and FightSMA are excited to announce a $100,000 award to Dr. Monique A. Lorson and University of Missouri in support of Dr. Lorson’s research focused on developing a large animal model of Spinal Muscular Atrophy (SMA).

Currently, no large animal model of SMA exists and the goal of Dr. Lorson’s research is to develop the first ever pig based model of SMA to be used by the broad, global SMA research community and other research groups to allow them to more efficiently and effectively move promising research from the bench to bedside. In short, this is a very exciting program that has the potential to have a material, positive impact on the future of SMA research in almost every category (e.g. gene therapy, compounds, antisense oligonucleotides).

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Runners raise thousands for those who can’t

November 17, 2011

Santa Barbara News-Press | November 13, 2011 | By Nikki Grey

They say they run so that one day those who can’t, can.

Although it takes strength, endurance, and dedication to run a marathon, runners on Team GSF say their sweat leading up to the Santa Barbara International Marathon was nothing compared to what it takes to provide care for a baby that has spinal muscular atrophy.

Representing Santa Barbara-based The Gwendolyn Strong Foundation, 30 runners raised more than $50,000 to spread awareness about the disease, as well as fund research for a cure.

The nonprofit foundation, which was established in 2009 and has raised nearly $1 million for its cause, is not just any organization working to combat a fatal disease.

Created by two Santa Barbara parents who were devastated when they realized a disease they had never even heard of would likely kill their daughter, the organization has spread its message and influence nationwide.

Bill and Victoria Strong say they are humbled by the efforts of the 30 runners to raise money to combat the disease that afflicts 4-year-old Gwendolyn.

“I think this is so powerful that people who can walk or run use their bodies so someday children who can’t, can too,” said Mr. Strong, a 35-year-old Internet entrepreneur.

According to the foundation’s website, spinal muscular atrophy is the No. 1 genetic killer of babies and young children. SMA is a degenerative illness that eventually hinders an individual’s ability to walk, stand, breathe, eat, and swallow.

Mr. Strong said that because of this disease, his daughter is essentially paralyzed and requires around the clock care to stay alive.

The mind, however, is never affected, said Mr. Strong.

“She’s just like any other kid,” he said. “We just try to give Gwendolyn the experiences of any other child. Although the disease is still terminal, her life is now, so we just try to live it that way and give her as many experiences as possible.”

Mrs. Strong, 34, said giving Gwendolyn the life she and her husband want for their daughter can be challenging, but there are always ways to make it work. An example is when Gwendolyn wanted to climb a tree with her preschool classmates. She was lifted into the tree.

Gwendolyn communicates with others, Mrs. Strong said, using her eyes. For “yes,” she rolls her eyes up, and for “no,” she blinks. When Gwendolyn is really excited, she rolls her eyes very fast, Mrs. Strong said.

Members of Team GSF participated in the marathon, half marathon and relay. They raised money mostly by asking friends, families and businesses to sponsor them for the event.

The third annual Santa Barbara International Marathon was Mr. Strong’s first marathon. He said the inspiration of running a marathon to raise awareness and funding for SMA research stemmed from when his friend Michael Paskin raised money for the foundation by participating in the Ironman triathlon in 2009.

Mr. Paskin said he is inspired by the strength the Strong family demonstrates every day.

“What they’re going through is so incredibly difficult and over the course of (Gwendolyn) suffering from SMA, I think it’s easier for some people to throw in the cards or just cope with the diagnosis,” Mr. Paskin said.” But Bill and Victoria have dedicated themselves to eradicating this disease.

“In light of all these obstacles, they still remain so positive, so motivated, and so inspiring,” he said.

Lauren Lundy O’Connor traveled from New York City to run in the marathon. She became passionate about finding a cure for SMA when her best friend’s son died from the disease a few years ago.

Ms. O’Connor, a second-grade teacher, said she connected with the Strongs on Facebook, became good friends with the family and has raised more than $20,000 for the foundation.

She said she is motivated by Gwendolyn’s strength — at 4 years old, Gwendolyn has already doubled the average life expectancy of a child diagnosed with SMA type I.

“Gwendolyn may be 4 years old, but she is my hero, because she is so strong,” Ms. O’Connor said. “She won’t stop fighting. She fights every day. That little girl has my heart.”

The Strong family has changed her perception of life, she said.

“Bad days aren’t really bad days. Every minute is really a gift and there are no guarantees. The way they give Gwendolyn the world teaches me not to take things for granted and to really appreciate the little things.”

While cheering on her husband and the rest of Team GSF at the marathon Saturday, Mrs. Strong was moved to tears by her team.

“The funny thing is they all want to thank us, but they are making a difference,” she said. “It’s easy to just say, ‘I’m really sorry,’ or ‘Their situation stinks,’ but they’re going to help change it and that’s incredible.”

Mrs. Strong stood with Mr. Paskin’s wife and Ms. O’Connor’s mother on the sidelines holding signs for their loved ones that read, “Team GSF” or “Never Give Up.”

The Strongs say they aim to make running the marathon an annual event for the foundation.

They hope to bring in more runners next year, which their supporters say they will have no problem doing. It seems they all have inspired each other.

“It would take an unbelievable amount of endurance to give Gwendolyn the quality of life they have and I think the group of us understand there’s a similarity there,” Mr. Paskin said.

Ms. O’Connor agrees. She said the Strong family’s dedication keeps her running. “I plan to run as long as I’m alive or until there is a cure for the disease, whichever comes first,” she said.

email: ngrey@newspress.com

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Gwendolyn Strong Foundation Freshens Brand, Launches New Website and Online Store

November 8, 2011

Gwendolyn Strong Foundation Freshens Brand, Launches New Website and Online Store

Press Release | November 7, 2011

The Gwendolyn Strong Foundation (theGSF), a Santa Barbara-based nonprofit organization dedicated to increasing global awareness of Spinal Muscular Atrophy (SMA), the #1 genetic killer of young children, and accelerating research focused on ending this cruel disease, has refreshed its brand and launched a new website, blog, and online store offering trendy merchandise featuring their new “NEVER GIVE UP.” slogan.

“We received our nonprofit exemption in August 2009 and since then we have accomplished so much,” said Victoria Strong, theGSF co-founder. “With the support of countless around the globe, we’ve raised nearly $1 Million, increased awareness of SMA, and have had a material impact on this brutal disease. But there is still much work to be done. Children with SMA never give up and neither will we. Our new brand and online presence clearly reflects where we’ve been and paves the way for our strategic direction as we look to the future.”

To explore the new theGSF website, please visit http://theGSF.org.

To browse the new theGSF shop, please visit http://theGSF.org/shop.

To make a tax-deductible donation to theGSF, please visit http://theGSF.org/donate.

About SMA: SMA is a terminal, degenerative genetic disease that impacts the voluntary muscles in infants and children, including the ability to walk, sit, stand, eat, breathe, and even swallow, while cognitive ability is never affected. Ninety percent of children born with SMA die before the age of two. One in every 40 people or nearly 175 Million globally unknowingly carry the gene responsible for SMA. There is currently no treatment or cure and although SMA research is underfunded, it is extremely advanced. theGSF is focused on helping ensure resources are not the obstacle in attaining that cure.

About Gwendolyn Strong Foundation (theGSF) – theGSF is based in Santa Barbara, California and seeks to increase awareness and research funding for Spinal Muscular Atrophy (SMA), the leading genetic killer of young children. To learn more about SMA and theGSF, please visit http://theGSF.org.

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