Spinal Muscular Atrophy (SMA) is a genetic neuromuscular disease. It is progressive, degenerative, and considered terminal. In fact, SMA is the #1 genetic cause of death for children under the age of two years old.
There are no treatments. There is no cure.
Statistically, 1 in every 6,000 live births worldwide results in SMA. Additionally, 1 in 40 people are carriers of the recessive gene responsible for SMA. Prognosis varies depending on the type of SMA expressed and its severity.
The motor neurons in people with SMA slowly die off from lack of the SMN protein required to keep the neurons alive. The result of neuron death is the muscle wasting away (atrophy). SMA affects voluntary muscles and the respiratory system of the body. The inability to crawl, walk, swallow, and smile are consequences of the disease. Scoliosis is also a consequence of SMA. Physical limitations are dependent on the severity of the disease and are progressive in nature. Respiratory complications often lead to death for those afflicted with SMA.
Lindsay Casten, owner of Mama Bracelets says, “SMA is a heartbreaking disease. Watching your child struggle with the disease is more than anyone should have to endure. We just want to help them…any way we can. She further explains, “The cognitive abilities of people with SMA are never affected. People with SMA are bright, intelligent people with personalities that often captivate people. Their strength in adversity is admirable.”
The National Institute of Health (NIH) has named SMA ‘the #1 disease of over 600 neurological disorders that is closest to a cure’. People with SMA, their families and friends, and businesses/charitable organizations are more hopeful than ever before that there will be treatments available, if not a cure, for this devastating disease very soon.
Mama Bracelets and The Jennifer Trust for Spinal Muscular Atrophy (JTSMA) are business and organization (respectively) that raise funds and awareness of SMA. Until recently they operated separate from one another other. Mama Bracelets is located in the U.S. and JTSMA is based in the U.K. In mid-August of 2013, Mama Bracelets and JTSMA forged a partnership that promises to raise much-needed funds to further the research already underway for SMA.
Mama Bracelets is an online business started by Lindsay and Michael Casten. The Castens have 3 children. Their youngest was diagnosed with SMA Type 2 in August of 2011. One response Lindsay and Michael had was to utilize their business, and Lindsay’s talent for designing and making jewelry, to support the SMA Community. By October 2011 Mama Bracelets launched their exclusive “Cure SMA” product line, which consists of two-bracelet styles (one is gender-neutral) one necklace design, and a key chain. All of the products are made from high-quality, long-lasting sterling silver. Mama Bracelets can also personalize the products through the classic art of hand- stamping. Since the launch of the product line, $3,000 has been donated to FSMA (Families of Spinal Muscular Atrophy).
‘The Jennifer Trust was founded in 1985 by Anita Macaulay following the death of her daughter Jennifer at the age of 7 months from Type 1 SMA. Anita was told the condition was so rare there was no research being done and that there were possibly only a few other families with a child affected by the condition in the country.’ [source: History of The Jennifer Trust].
In the 22 years since JTSMA has existed it has expanded to be a central resource for UK families diagnosed with SMA as well as a key financial supporter for the ongoing research. In the last 8 years, JTSMA has raised over £600,000 for a variety of research products. During the 2013/14 financial year JTSMA will b e supporting 4 SMA projects.
JTSMA has dedicated a page on their website offering Mama Bracelets’ exclusive “Cure SMA” products for sale. The four products are displayed on the webpage and are linked to Mama Bracelets’ dedicated page on their website for JTSMA. On these pages, one can order any of the “Cure SMA” products and Mama Bracelets will create the product, ship it anywhere in the world, and donate 15% of the proceeds to JTSMA.
“We are so excited to expand our reach into the UK,” says Michael Casten (Director, PR/Finance for Mama Bracelets), “it is a great opportunity to provide people with a high-quality, long-lasting product that reminds us all of those who have fought and lost their lives to SMA as well as those still battling the disease. They are ‘simply stylish’ and compliment any wardrobe. Being able to donate to JTSMA is rewarding in and of itself.”
Visit the Mama Bracelets Page (on the JTSMA website) here:
Visit the JTSMA Page (on the Mama Bracelets’ website) here: