Trusted Resources: Community Center

Open lines of communication are important. While people with SMA have unique challenges and concerns, they also face the same challenges and concerns as any other young person. Don’t lose sight of the normal experience of growing up. Recognize a person’s needs, such as a greater need for privacy. Foster independence, such as encouraging a person to take a greater role in their own healthcare. Encourage good health, including exercise, eating well, and avoiding things like alcohol, smoking, and recreational drug use. 

When I tell people that Céline has SMA, they often say things like, "I'm so sorry, that must be so hard for you." But for me, the truth is that I'm comfortable and happy with the busy life that comes along with being an SMA mom. Of course, when I first got the news, it was an extremely difficult time, to say the least. However, at this point, I have completely accepted Céline's diagnosis and have adjusted. I don't think about her diagnosis much from day to day. We've made many modifications to our everyday life, but it's second nature at this point. Céline does just about everything a typical child would do (albeit differently), and she fully enjoys life.  

Scarlet was born at 40 weeks and 1 day. She was nearly 10 pounds and took 2 full days to make her entrance. As with almost all SMA kids, I had no idea anything was wrong with my perfect little potato-baby. Her face was smushed and swollen like all other babies. She had all 10 long fingers and all 10 fat little toes. Her first identifier was her bright red lips, that just about sealed the deal in naming her Scarlet. She was perfect. 

Every year, millions of newborns in the United States are screened for certain severe medical conditions before leaving the hospital. Through a few drops of blood, the tests look for disorders that can cause lifelong health problems and potentially early death if not treated. Spinal muscular atrophy (SMA) is a rare genetic disease and, if diagnosed early, can be treated to stop its progression. Newborn screening can play a critical role in an early diagnosis and early treatment. Unfortunately, not every state has SMA on their newborn screening panel, and that is what drove one mother to champion for newborns with SMA. 

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Donald S. Wood, PhD, President and CEO of the Muscular Dystrophy Association (MDA). Their conversation focuses on the latest therapies for Duchenne muscular dystrophy and spinal muscular atrophy and on the upcoming 2022 MDA Clinical & Scientific Conference.

Kathie Bishop, Ph.D., knows exactly what it takes to lead cutting-edge therapeutics for neurologic and rare diseases from research to development to changing lives for patients and their families.She is the Senior Vice President, Chief Scientific Officer and Head of Rare Disease at Acadia Pharmaceuticals – a role that was created specifically for her when she joined the company nearly a year ago in January 2021. 

KERA’s Sam Baker talks with Dr. Angela Mix, a pediatrician at Texas Health Plano, about spinal muscular atrophy and the importance of adding it to the newborn screening panel.  

SMA My Way is a support platform for the SMA community including SMA patients, caregivers, family and friends. Read stories, share experiences and connect with members. 

At SpinalMuscularAtrophy.net we empower people diagnosed with spinal muscular atrophy and caregivers to take control by providing a platform to learn, educate, and connect with peers and healthcare professionals.

Never Give Up is a nonprofit and apparel for kind humans organization. It donates 100% of profit to SMA patients and families as a support. 

Together in SMA, brought to you by Biogen, offers life hacks, tips, and stories for the spinal muscular atrophy (SMA) community. 

SMA Foundation is the leading funder of SMA research worldwide - over $100M has been spent on basic, translational, and clinical research. We have invested more than $30M on developing critical, validated research tools and other drug discovery assets. Our mandate is to ensure that all of the results of our research funding are made readily available to every SMA researcher with minimal cost and obligation.The SMA Foundation was established in 2003 by Loren Eng and Dinakar Singh, parents of a child with SMA.

The Gwendolyn Strong Foundation (GSF) was born out of Bill and Victoria Strong’s firsthand experience with their precious daughter, Gwendolyn. Gwendolyn was born perfectly healthy in October 2007, but was diagnosed with the terminal disease Spinal Muscular Atrophy (SMA) Type I at 6-months-old.As witnesses to the degenerative cruelty of SMA, Bill and Victoria are personally and passionately dedicated to leaving no stone unturned in raising awareness about and funding research for SMA and supporting families who are impacted by SMA and other life-altering diseases.

SMA Foundation stands with the mission to accelerate the development of Spinal Muscular Atrophy treatment.  

SpinalMuscularAtrophy.net is a community for people affected by Spinal Muscular Atrophy. It helps them to learn, share, and connect with peers and healthcare professionals.  

Never Give Up is a nonprofit and apparel for kind humans organization. It donates 100% of profit to SMA patients and families as a support.

"Dealing With Spinal Muscular Atrophy: Guide To Connecting With Disability Living: Dealing With The Social Life" takes the reader on a unique journey through the disease's many complexities. Personal accounts offer insights into the adverse socioeconomic outcomes that a patient has to face such as less education, poorer health outcomes, lower levels of employment, and higher poverty rates. This book introduces to the reader an in-depth look into the world of disability offering advice on a wide variety of topics including dealing with the medical system, educational system, and social life of a disabled person. Follow the heartfelt and honest journey through the author's diagnosis all the way through to his modern-day life, and the lessons he has learned along the way when growing up with Spinal Muscular Atrophy.

"Dying To Live" is the autobiography of Ramon Hansford a truly remarkable 22 year old lad with Spinal Muscular Atrophy (SMA) Type 2, part of the muscular dystrophy family of diseases. Despite his severe limitations he can still operate a phone using text and email. His brain is one hundred percent fully functional, he communicates extremely well and has a wicked sense of humour as well as being extremely caring and patient. The book highlights how Ray has coped with his disability, and how he has lived life to the full whilst facing his own mortality. Sadly the average life expectancy for someone with Ray's condition is late teens which proves what tremendous courage and spirit Ray possesses. He hopes his book will inspire others as well as giving professionals an insight into caring for others like him and how it feels to be on the receiving end of the care system. 

Spinal muscular atrophy (SMA) is a hereditary condition characterised by muscle wastage (atrophy) and weakness (skeletal muscles). It is caused by the loss of motor neurons, which are specialised nerve cells that control muscular movement. Progressive Spinal Muscular Atrophy (First Edition) provides a wonderful insight on the overview, symptoms, causes, and latest advancements in research regarding the disease. The book covers in depth the latest research information as well as newly discovered potential causes of Progressive Spinal Muscular Atrophy.

This workshop is designed to provide an overview of the common considerations for K-12 educational planning, including 504 plans, Individualized Education Plans (IEPs), planning for outside the classroom, and other transitions in education. This workshop will briefly cover education laws that are in place to protect students as well as what the neuromuscular disease community can expect if there is a dispute with the school. The community will take away tools and resources to support them as they advocate for their student’s right to an appropriate education. The workshop is designed so participants can take the full workshop or navigate to a specific area of interest.

On February 19th, 2022, the Flying Pigs Foundation will host their 5th annual “Night at the Races” event. Their last event, in 2020, had over 300 people in attendance and raised over $42,000 for the St. Louis Muscular Dystrophy Association (MDA). In 2022, they are hoping for continued support from the local community. This unique event is an adults only "horse race" to raise money and is a great way to enjoy an evening out while generously supporting potential life changing opportunities for people that have muscle diseases. This event has ended. 

The Pediatric SMA Clinical Research Center, which operates conjointly with the Pediatric Neuromuscular Clinic at Columbia University, is organized according to a team model. The clinic offers special expertise in SMA and other neuromuscular disorders, and provides access to highly skilled neurologists, pulmonologists, cardiologists, physiatrists, orthopedists, psychologists, nurse practitioners, and therapists who work collaboratively to deliver the utmost compassionate, high quality care to each of the patients we serve. Every dollar raised will go directly towards clinical care and research advances for patients with SMA. The SMA Clinic will also be starting a loan closet of equipment. The equipment will be distributed to families in the area. They are urging individuals who have any equipment that they do not need to donate it to the clinic.

The Andrew "Sparky" Seever Scholarship honors the vibrant spirit of our former board member, who lived with Duchenne muscular dystrophy. Applicants must be diagnosed with muscular dystrophy or another neuromuscular disease, reside in the state of Indiana, and be high school graduates (or on track to graduate). Applicants enrolled in a two- or four-year post-high-school institution, tech or trade school, or accredited certificate program will be considered. Decisions will be further based on: financial need, academic achievement, leadership, community involvement and other activities; and personal character. 

Jack Scura Fund is designed to recognize students with a special need who are of good standing in school and in their communities. The scholarship program is named in memory of John (“Jack”) Joseph Scura II, Esq. He was the founding partner of the firm and a true renaissance man. He treasured education putting himself through college and law school while juggling four kids alongside his wife of 52 years Kathleen Scura. He quietly and selflessly made the lives around him better. Jack passed away on September 24, 2018. This scholarship is to carry on Jack’s dedication to education and helping others. The Jack Scura Fund therefore offers a $7,500 scholarship to disabled high school seniors who will be enrolling in an undergraduate program in the fall or are currently enrolled. Applicants must be an incoming or current student of an undergraduate program of a New Jersey college or university and have any kind of disability. Student must have a 3.2 and above GPA (based on a 4.0 scale). Special attention will be given to applicants who have tremendous resumes or Curriculum Vitae. Must have proof of disability documentation. 

PATH-WAY is a not-for-profit organization created, designed, organized and committed to elevating the lives of individuals with varying degrees of abilities. Scholarship recipients must have a physical disability, which may include but not limited to, neuromuscular disorders or musculoskeletal impairments such as cerebral palsy, muscular dystrophy, SMA, dystonia, osteogenesis imperfecta, spinal cord injury, or amputee and must be a resident of MA, NH, ME, or RI. Applicants must be a high school graduate/graduating senior.

The Ryan Hawn Memorial Scholarship is a $1,000 scholarship awards each spring to a graduating high school senior who has a muscle disease diagnosis.  Ryan was the son of Christopher and Jennifer Hawn, co-founders of the The Flying Pigs Foundation. Ryan was diagnosed with Spinal Muscular Atrophy Type I when he was 3 months old. He passed away on July 28th, 2009 at the age of 6 months and 1 day.  His life was brief, but what he has left behind is a legacy of love and the desire in his parent’s hearts to help other individuals with muscle diseases.