Welcome to JJ's Journey!
Monday, August 29, 2011
Summer's Almost Over (Living w/ Spinal Muscular Atrophy)
Wow. I can't believe that summer is almost over. It went by super fast this year. Jenna is so excited to return to school next week, she giggles every time I mention it. Today was school supply drop off day. She insisted that she wear a "gown" and have her hair straightened. We didn't see any friends today, but I'm sure next week will be full of them. And good news her cousin Cooper will be across the hall from her! She loved that idea too.
Wednesday, August 3, 2011
SMArt Walk For A Cure - Team JJs Journey (Living w/ Spinal Muscular Atrophy)
We are participating in the SMArt Walk For A Cure to benefit Families of Spinal Muscular Atrophy and I need your help! Please consider making a donation to my personal fundraising page. SMArt Walk For A Cure - Team JJs Journey
Families of Spinal Muscular Atrophy is my charity of choice because: - One in 6,000 babies born this year will be diagnosed with SMA; - They support all those affected by SMA with critical information, resources and equipment; - Research funded by this amazing organization is providing HOPE for the development of a treatment and cure.
SMA is a devastating genetic disease that destroys the nerves that control voluntary movement. Children born with SMA may never crawl, walk, or even lift their head. Families who live with SMA turn to Families of Spinal Muscular Atrophy for information, guidance, encouragement and most importantly; HOPE.
Making a donation to Families of SMA is easy, secure and completely confidential. Just click on the link and follow the steps!
Thank you for joining me in my quest to support Families of SMA. Your tax-deductible gift will bring us one step closer to creating a world where Spinal Muscular Atrophy is treatable and curable.
Walk to benefit Spinal Muscular Atrophy (SMA)
WNY Metro Source Newspaper
At 9 a.m. Saturday, Aug. 6, hundreds of children and adults will come together at the Beaver Island State Park on Grand Island to have fun, but more importantly to raise money to find a cure for Spinal Muscular Atrophy (SMA). Some people will walk, but others will be pushed in their wheelchairs or use motorized chairs because they are living with SMA.
SMA is a genetic disorder that affects voluntary muscle movement. Children and adults with SMA slowly lose control of the muscles that allow them to crawl, walk, even swallow or breathe.
Some quick facts about SMA:
SMA is the leading genetic killer of children under the age of two.
One in 40 people carry the gene that causes SMA.
SMA can strike anyone of any age, race or gender
There is no cure for SMA, but there is hope.
Approximately 400 people will be participating in the three-mile walk and festivities. Among the events scheduled to take place are: music, face painting, clown, basket raffle, 50/50, and food and refreshments. Registration for the event is at 9 a.m. and the walk begins at 10 a.m. Events will continue until 2 p.m.
“We never knew about SMA until our daughter, Jenna, was diagnosed,” said Lancaster resident and Western New York Families of SMA (FSMA) Chapter Correspondent Mary Boguhn. “She started losing her ability to hold her head up at five months old and was never able to stand or sit on her own. After many appointments with a specialist, we learned our daughter had a muscle wasting, auto-recessive disease called Spinal Muscular Atrophy. Due to her weakened respiratory status, Jenna started on several respiratory machines such as the Bilevel Positive Airway Pressure (BiPAP), cough assist, and nebulizer treatments. She soon lost her ability to swallow and went through surgery and a feeding tube was placed. Although there is no cure for this disease, we have hope. FSMA are funding research that is bringing us very close to a treatment for this disease. We know that our efforts in organizing this effort may help bring that day closer.”
Currently FSMA are funding clinical trials of a possible treatment for SMA. FSMA is also funding several drug discovery efforts that we hope will lead to a novel treatment for this disease. Funds raised at this event will help sustain those programs, as well as promote better understanding of SMA, and provided invaluable support for families living with SMA.
There are more than 7.5 million carriers of the genetic risk factors for SMA gene in the US alone, and the disease SMA affects approximately one in every 6,000 live births. SMA is usually diagnosed when babies are less than 18 months old, although certain types of the disorder can appear in later life.
Adults are $15 per person. For more information on the event please contact Boguhn at 984-4233 or meb0810@gmail.com. All funds raised will benefit Families of SMA.
About Families of SMA
Families of Spinal Muscular Atrophy (FSMA) is dedicated to creating a treatment and cure by funding and advancing a comprehensive research program; supporting SMA families through networking, information and services; improving care for all SMA patients; educating health professionals and the public about SMA; enlisting government support for SMA; embracing all touched by SMA in a caring community. FSMA's vision is a world where Spinal Muscular Atrophy is treatable and curable.
Families of SMA funds and directs the leading SMA research programs. Successful results and progress from basic research to drug discovery programs to clinical trials provide real hope for families and patients. Families of SMA is a non-profit, 501(c)3 tax exempt organization with 29 Chapters throughout the United States and more than 65,000 members and supporters.
Please visit the website www.curesma.org or www.wnyfsma.org for more information on this disease and the organization.
At 9 a.m. Saturday, Aug. 6, hundreds of children and adults will come together at the Beaver Island State Park on Grand Island to have fun, but more importantly to raise money to find a cure for Spinal Muscular Atrophy (SMA). Some people will walk, but others will be pushed in their wheelchairs or use motorized chairs because they are living with SMA.
SMA is a genetic disorder that affects voluntary muscle movement. Children and adults with SMA slowly lose control of the muscles that allow them to crawl, walk, even swallow or breathe.
Some quick facts about SMA:
SMA is the leading genetic killer of children under the age of two.
One in 40 people carry the gene that causes SMA.
SMA can strike anyone of any age, race or gender
There is no cure for SMA, but there is hope.
Approximately 400 people will be participating in the three-mile walk and festivities. Among the events scheduled to take place are: music, face painting, clown, basket raffle, 50/50, and food and refreshments. Registration for the event is at 9 a.m. and the walk begins at 10 a.m. Events will continue until 2 p.m.
“We never knew about SMA until our daughter, Jenna, was diagnosed,” said Lancaster resident and Western New York Families of SMA (FSMA) Chapter Correspondent Mary Boguhn. “She started losing her ability to hold her head up at five months old and was never able to stand or sit on her own. After many appointments with a specialist, we learned our daughter had a muscle wasting, auto-recessive disease called Spinal Muscular Atrophy. Due to her weakened respiratory status, Jenna started on several respiratory machines such as the Bilevel Positive Airway Pressure (BiPAP), cough assist, and nebulizer treatments. She soon lost her ability to swallow and went through surgery and a feeding tube was placed. Although there is no cure for this disease, we have hope. FSMA are funding research that is bringing us very close to a treatment for this disease. We know that our efforts in organizing this effort may help bring that day closer.”
Currently FSMA are funding clinical trials of a possible treatment for SMA. FSMA is also funding several drug discovery efforts that we hope will lead to a novel treatment for this disease. Funds raised at this event will help sustain those programs, as well as promote better understanding of SMA, and provided invaluable support for families living with SMA.
There are more than 7.5 million carriers of the genetic risk factors for SMA gene in the US alone, and the disease SMA affects approximately one in every 6,000 live births. SMA is usually diagnosed when babies are less than 18 months old, although certain types of the disorder can appear in later life.
Adults are $15 per person. For more information on the event please contact Boguhn at 984-4233 or meb0810@gmail.com. All funds raised will benefit Families of SMA.
About Families of SMA
Families of Spinal Muscular Atrophy (FSMA) is dedicated to creating a treatment and cure by funding and advancing a comprehensive research program; supporting SMA families through networking, information and services; improving care for all SMA patients; educating health professionals and the public about SMA; enlisting government support for SMA; embracing all touched by SMA in a caring community. FSMA's vision is a world where Spinal Muscular Atrophy is treatable and curable.
Families of SMA funds and directs the leading SMA research programs. Successful results and progress from basic research to drug discovery programs to clinical trials provide real hope for families and patients. Families of SMA is a non-profit, 501(c)3 tax exempt organization with 29 Chapters throughout the United States and more than 65,000 members and supporters.
Please visit the website www.curesma.org or www.wnyfsma.org for more information on this disease and the organization.
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