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How Families of SMA Can Help

How Families of SMA Can Help 

Families of SMA is a resource for unbiased support. We do not advocate any specific choices or decisions; we are here for anyone who wishes to talk through their options. All choices related to SMA are highly personal and need to reflect your own personal values.

Families of SMA is a non-profit organization and the largest worldwide network of families, clinicians, and research scientists working together to advance SMA research, support families, and educate the public and professional communities about SMA.
Families of SMA is a resource for unbiased support. We are here to help all individuals living with SMA and their loved ones, and do not advocate any specific choices or decisions. Parents and families make different choices regarding what is best for their families and children, consistent with their personal beliefs. Parents and other important family members should be able to discuss their feelings about these topics, and to ask questions of their SMA care team. Such decisions should not be made lightly and all options should be considered and weighed carefully. All choices related to SMA are highly personal and should reflect personal values, as well as what is best for each child, individual, and family. Families are never alone. Families of SMA is always just a phone call away.
As caring parents and professionals, we can offer support and understanding. Through phone and multimedia networking, the team at Families of SMA is here to support you, along with other families and friends affected by SMA. We provide invaluable support and services to individuals and families such as: medical information and equipment, support and resources, an annual conference, local community support through our vast volunteer network, regular publications, and web-based support including an “Ask the Expert” service.

We send SMA Type I, Type II, and Type III care packages to all newly diagnosed families who contact Families of SMA. These care packages include a range of items such as informational materials, toys appropriate for individuals with each type of SMA, books, blankets, hand-made quilts, and DVD’s. Many ideas for the items in these Care Packages come from SMA parents themselves.

The Newly Diagnosed Binder is a program that was launched as a way to help families with information and resources specific to each state. These binders contain important information about SMA, including all of the SMA Care Series Booklets and a list of resources available to the family in their own state. This binder also acts as an organizational tool, where families can keep important medical information concerning their child, all in one location. Every family receives a binder in their Newly Diagnosed Care Package.

Families of SMA was offered a generous donation of wagons from Radio Flyer Inc. for our Newly Diagnosed Care Package Program. We are thrilled to be able to provide Radio Flyer Wagons to all newly diagnosed families once they contact FSMA. These wagons are beneficial for all types of SMA. For Type I infants, the wagons are wonderful, as these children often are required to lay flat once they lost muscle tone and cannot adequately support themselves. For Type II and Type III families, these wagons are ideal for parents to be able to transport their children without the use of a stroller or wheelchair.

We also provide our members with a subscription to our Family Support Newsletter called Directions, and our publication dedicated to SMA research news and progress, called Compass. Directions contains information on daily living, letters and stories from families, upcoming events, articles by doctors and researchers, and other resources.

Because Families of SMA understands the financial hardship of living with SMA, the organization also maintains an equipment pool, which is available free of charge to members of Families of SMA. Families of SMA has a widespread list of equipment suitable for SMA children in our Equipment Pool. Once the family is no longer in need of the item, we kindly ask them to return it so that we are able to loan it to another family. Some of the items in our Equipment Pool have been donated by other SMA families. Other items have been purchased with funding that Families of SMA receives specifically to purchase certain items for the Equipment Pool. Some of the items in the FSMA Equipment Pool include:
 • Car Beds (Infant Cosco Car Bed and the Hope Car Bed)
 • EZ-On Vests
 • Bath Chairs
 • Medical Strollers
 • Manual Wheelchairs
 • Standers
 • Therapy and Positioning Devices

The Annual SMA Conference
Every year, Families of SMA sponsors a conference to bring together the leading SMA researchers, clinicians, and families living with SMA. Families of SMA has been hosting the Annual SMA Conference for over 24 years. The weekend is filled with a wide variety of workshops, a memorable children’s program, a family fun fest and carnival, many opportunities to connect and interact with families and receive first hand updates from the researchers. Every year we look forward to reuniting as a community at this conference and showing our support for others. As always, the Family and the Research Conferences run alongside each other. This is the largest conference in the world for those affected by SMA, and also for those involved in providing support and care for SMA patients. There is no other program like it for those affected by SMA. The interactions between the researchers and families at this one conference are extremely special. The annual conference also provides these children an opportunity to make new friends and have a great time.
The Goals of the SMA Conference:
1) To allow networking between researchers, medical providers,
patients and families
2) To educate researchers on the latest research advancements
3) To attract the best researchers to the SMA field and encouage collaborations
4) To educate patients and families on the basics of SMA
5) To update patients and families on the latest research and medical progress

Continuing Medical Education Conference
Families of SMA has introduced a new component for medical professionals at the Annual SMA Conference. A Continuing Medical Education Conference is now held prior to the start of the Annual SMA Conference and Researcher Conference. The CME Conference, titled “Interdisciplinary Perspectives on Spinal Muscular Atrophy: Defining Your Role”, for medical professionals, is the first of its kind for Families of SMA. The conferences have previously covered two components of SMA; Research and Support. The Research aspect covered scientific, research & clinical updates, while the Support aspect included the family support workshops and family networking. The addition of this conference provides an exciting new third component of Care to the Families of SMA Conferences by educating medical providers on SMA. Families of SMA partners with an accredited hospital who can provide continuing medical education credits for medical professionals, and offers a full-day of lectures and educational materials to all attendees.

Newly Diagnosed Conference Program
FSMA covers the registration fees for the Annual SMA Conference for all families newly diagnosed since the last conference. Our goal is to allow as many newly diagnosed SMA families as possible to attend and experience the benefits of this amazing conference. The meeting gives families the opportunity to gather critical care and daily living information early after diagnosis, learn directly from experienced SMA physicians, and network with other families. This program is automatically offered to all newly diagnosed families that contact Families of SMA.

Conference Scholarship Program
Financial need scholarships are also available to assist SMA families in attending the conference, who do not qualify for the Newly Diagnosed Program. This program allows families who may not be able to financially afford attending the conference, the opportunity to apply to this program and receive financial aid, in the hopes that by waiving their registration fees so that they may be able to attend the conference.

FSMA Websitewww.CureSMA.org

The Families of SMA website provides vital up-to-date information and advice that families need on a variety of SMA-related issues. The website is here to help guide families through a wide variety of general information on SMA. The Support section of the Families of SMA website is always color coded as the Orange Section of the website. This section is a wonderful resource for families. Some of the information available includes:
 • Coping with the SMA diagnosis
 • Advice and information on the basics of SMA, where we have links
to our SMA Care Series Booklets in PDF format, quick facts on SMA and Frequently Asked Questions
 • Education for SMA-affected individuals
 • FSMA Publications
 • Information on SMA medical care including respiratory care,
physical and occupational therapy, and nutrition
 • Adapting toys for SMA children
 • Information on the Annual SMA Conferences
 • Photo Albums and Family Stories
 • Links to Families of SMA chapter pages
 • Resources for grief and loss
 • SMA Networking opportunities through the
SMA Community Connections Site
 • Legislative information
 • Links of information for adults with SMA

Families of SMA offers free informational booklets called SMA Care Series to all families, friends and professionals. These booklets are available on a variety of specific topics such as Genetics and Diagnosis, Respiratory Care, Nutrition and many more. SMA Care Series Booklets are also available in Spanish, as well as on our website for download.

Families of SMA offers an “Ask the Expert” service where families can get important health-related answers to their questions with the help of the FSMA Medical Advisory Council (MAC).

Families of SMA will provide a Primary Care Provider Packet to any primary care provider who contacts FSMA or through a family submission. These packets are specifically designed for primary care providers who may not be familiar with Spinal Muscular Atrophy. We hope to encourage and spread SMA awareness throughout the medical community by sending this important information to providers.

The FSMA Professional Care Provider Mailing List is a database containing our professional members. The database includes: Pediatricians, Neurologists, Pulmonologists, PT’s, OT’s, Urgent Care and Children’s Hospitals. We keep these providers up to date on the latest SMA information available, by mailing them all new and updated SMA Care Series Booklets. Our Professional Care Provider Mailing List currently includes over 1,000 providers from all over the US. If you would like any of your family’s care providers added to this mailing list, please email info@fsma.org or call (800)886-1762.

The Families of SMA Facebook page is the best place to receive constant updates on anything and everything SMA related. It is also a wonderful place to network with many SMA families worldwide. Please visit www.facebook.com/familiesofsma

SMA Community Connections is a social network community site which allows families from all over the world to connect with each other to chat, organize, and share stories, photos, news, and information. Just log in at www.SMACommunity.org and start sharing. Knowing there are others out there fighting alongside you is incredibly empowering, and the advice and personal anecdotes can make a real difference in the lives of you and your family.

We are always available if you want to talk with others who understand. Families of SMA has 31 Local Chapters chapters throughout the US, as well as networking programs that link families together for mutual support. Please contact us at any time!

Please see the booklet entitled Families of SMA Family Support and Patient Services for more information on the ways in which Families of SMA offers support.

If you know someone who has been recently diagnosed with SMA,  please e-mail infopack@fsma.org to request a free informational packet.


 

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