Tag Archives: 2014

August is SMA Awareness Month

August is SMA Awareness month and families and friends around the country are joining together to help increase awareness—not only of SMA, but also of our hope for a treatment and cure.

What is Spinal Muscular Atrophy?
Spinal Muscular Atrophy (SMA) Types I, II, and III belong to a group of hereditary diseases that cause weakness and wasting of the voluntary muscles in the arms and legs of infants and children. The disorders are caused by an abnormal or missing gene known as the survival motor neuron gene 1 (SMN1), which is responsible for the production of a protein essential to motor neurons. Without this protein, lower motor neurons in the spinal cord degenerate and die. The type of SMA (I, II, or III) is determined by the age of onset and the severity of symptoms. Type I (also known as Werdnig-Hoffman disease, or infantile-onset SMA) is evident at birth or within the first few months. Symptoms include floppy limbs and trunk, feeble movements of the arms and legs, swallowing and feeding difficulties, and impaired breathing. Type II (the intermediate form) usually begins 6 and 18 months of age. Legs tend to be more impaired than arms. Children with Type II may able to sit and some may be able to stand or walk with help. Symptoms of Type III (also called Kugelberg-Welander disease) appear between 2 and 17 years of age and include difficulty running, climbing steps, or rising from a chair.  The lower extremities are most often affected.  Complications include scoliosis and chronic shortening of muscles or tendons around joints.

Is there any treatment?
There is no cure for SMA. Treatment consists of managing the symptoms and preventing complications.

What is the prognosis?
The prognosis is poor for babies with SMA Type I. Most die within the first two years. For children with SMA Type II, the prognosis for life expectancy or for independent standing or walking roughly correlates with how old they are when they first begin to experience symptoms – older children tend to have less severe symptoms  Life expectancy is reduced but some individuals live into adolescence or young adulthood.  Individuals with SMA type III may be prone to respiratory infections but with care may have a normal lifespan.

What research is being done?
Between 2003 and 2012, the NINDS piloted the Spinal Muscular Atrophy Project to expedite therapeutics development for this hereditary neurodegenerative disease. The Project was designed to accelerate the research process by identifying drugs that increase the level of SMN protein in cultured cells, so that they could be used as potential leads for further drug discovery and clinical testing. Read more about the history of this pioneering effort and how it led to collaboration with several pharmaceutical and biotechnology companies.

Holiday Mail for Heroes: Give Something That Means Something

Holiday Mail for Heroes- Give Something that means something 2014

Program Overview

With many service members and veterans separated from their families this holiday season due to deployments and hospital stays, the American Red Cross Holiday Mail for Heroes (HMFH) program empowers people to “Give Something That Means Something” by sending a card of thanks and support to the members of the Armed Forces, veterans and their families.

Beginning in 2014, the program will take on a different look, as Red Cross chapters across the continental U.S. and Red Cross offices on military installations overseas will take complete control of the program. There will no longer be a national Holiday Mail for Heroes P.O. Box to which cards are sent.

Moving forward, local Red Cross offices will collect, sort, and distributing the holiday cards using an events-based approach in their local communities. Local Red Cross offices will:

  1. Hold events to sign or make holiday cards
  2. Schedule card-sorting times.
  3. Coordinate card delivery to the military, vets and families in their communities.

These changes will allow local Red Cross offices to better concentrate on reaching out to the members of the military, veterans and families in their community—neighbors helping neighbors.

Questions & Answers

What is the Holiday Mail for Heroes Program?
The Red Cross Holiday Mail for Heroes program enables Americans to “Give Something That Means Something” this holiday season. We are inviting the public to send cards of thanks, encouragement and holiday cheer to members of our U.S. Armed Forces, veterans and military families, many of whom will be far away from home this holiday season.

What is the address of the P.O. Box for the program?
There is no longer a national P.O. Box for the program. Instead, Holiday Mail for Heroes is being conducted at the Red Cross office in your local community. Check with your local Red Cross for times and locations of events and for opportunities to get involved.

Why is the Red Cross changing the format of the program?
We have made this change for several reasons including:

  • A reduction in U.S. military forces overseas, particularly in the Middle East and across Europe.
  • Increased costs of conducting the program.

I contacted my local Red Cross office and they are not participating in the program this year. Where do I send my cards?
There are two options for sharing your holiday cards:

  • Ask your local Red Cross office for military and veterans organizations in your community where you can send your cards directly.
  • Check the participating chapters tab for updated information regarding the closest Red Cross chapter in your area participating in Holiday Mail for Heroes.

I don’t know anyone in the military; how do I participate?
You don’t need to know anyone in the military. Red Cross workers will distribute cards to members of the military and veterans around the world. Contact your local Red Cross for times and locations of card-signing and card-making events.

Cards are not addressed to anyone specific, so who gets these cards?
Participating Red Cross chapters will determine how to best distribute cards to service members, veterans and family members in their local communities, across the nation and around the world. Cards may be delivered individually, included in care packages or displayed at common venues in military installations and hospitals.

Can I drop cards off at my local Red Cross office?
Yes.

Will my card be distributed to our troops stationed overseas?
Cards are distributed to hundreds of locations domestically and around the world, including military installations, military and VA medical facilities and veterans organizations. Please understand that it is difficult to determine which cards will be sent overseas and which will be sent domestically.

What is the goal for the 2014 Holiday Mail for Heroes Program?
The goal is to share season’s greeting and holiday cheer to the members of our Armed Forces. We do not have a goal for a total number of cards.

Are there other restrictions and guidelines for cards?
In order to make cards as meaningful as possible to a wide audience, we recommend that the public use generic titles such as “Dear Service Member, Veteran, or Military Family Member” when writing the cards. Cards should not contain glitter because some cards may end up at the bedside of a wounded service member and the glitter could aggravate existing health issues.

Can I include calling cards, money or other items in the cards?
We ask that people not enclose any items with the holiday cards. Any items enclosed with the holiday cards will be removed, including photos and other gifts. If you wish to provide financial support for Red Cross services to the military, please donate online.

How can people get involved in the Holiday Mail program beyond mailing a card?
  • Word of Mouth: Check with your local Red Cross office for up-to-date information about the program.
  • Social Media: Connect with fellow card senders through social media channels and help us get the word out through Facebook and Twitter. Be sure to use the hashtag #holidaymail.
  • Help Sort and Deliver Cards: If you are interested in helping sort and deliver cards, please contact a participating chapter in your area to see how you can help.

How can people support other Red Cross programs that help members of the military and their families?
Supporting Red Cross Service to the Armed Forces work is simple and we encourage you to make a financial donation by donating online or calling 1-800-RED CROSS.

**Contact your local Red Cross chapter directly to find out if they are participating**