Team 25

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The mission of Shjon Podein's Children's Foundation is to improve the quality of life and create an environment of caring and community support for children facing extraordinary difficulties in their lives. The children, their families, our board and volunteers, sponsors and celebrities all work together in our efforts to accomplish this mission. TOGETHER we are Team25.


Brandon Rolen Foundation

brandon rolen foundation

“Brandon has been diagnosed with S.M.A. Type 1(Spinal Muscular Atrophy) at the age of 3 1/2 months old. It's a fatal genetic disorder and the doctors do not believe he will make it to his first birthday. -God Bless our Precious Angel Brandon.”

Brandon is the second child of Sampson and Malune Rolen. Brandon has an older brother, Sampson, who will be 6 years old in April 2007. Sampson love his brother Brandon so much that when Sampson first ever found out about his brother when Mommy was pregnant, Mommy and Daddy immediately told Sampson that he is going to be a big brother. Sampson was so happy that he hugged and kissed Mommy’s tummy and said, “I love you baby”. And to this day, Sampson kisses Brandon every morning and watches over his brother with love and care by helping Brandon at his feedings to helping put lotion on Brandon and even making sure Brandon has a toy to play with.

Brandon just turn 4 years old, he weight 36.7 lbs and 43 inches tall. Brandon has 24 hours homecare nurses. Dr. James Ilko of Ilko Family Medicine in Woodbury, MN as Brandon’s primary Doctor. He also sees Dr. Michael Shreve and Dr. Paul Kubic, Pulmonologist from Childrens Hospital and also see Dr. Stephen Smith , Neurologist and Dr. Mark Gormely, Physiologist. Brandon receives therapy from Farmington school district.

Brandon uses a lot of equipment to keep him healthy like BiPap, Nebulizer, Cough Assist, Vest and Suction machine. Brandon is fed through a G-tube.

 

MDA

mda

MDA is the nonprofit health agency dedicated to curing muscular dystrophy, ALS and related diseases by funding worldwide research. The Association also provides comprehensive health care and support services, advocacy and education.

MDA combats neuromuscular diseases through programs of worldwide research, comprehensive medical and community services, and far-reaching professional and public health education. With national headquarters in Tucson, MDA has more than 200 offices across the country, sponsors 220 hospital-affiliated clinics and supports nearly 400 research projects around the world.

MDA supports more research on neuromuscular diseases than any other private-sector organization in the world. MDA scientists are in the forefront of gene therapy research and have uncovered the genetic defects responsible for several forms of muscular dystrophy, Charcot-Marie-Tooth disease, a form of amyotrophic lateral sclerosis (ALS, or Lou Gehrig's disease), childhood spinal muscular atrophy, and several other neuromuscular conditions.

The Association's comprehensive service program includes medical examinations, flu shots, support groups, MDA summer camps for youngsters and assistance with purchase of wheelchairs and leg braces.

MDA was created in 1950 by a group of adults with muscular dystrophy, parents of children with muscular dystrophy, and a physician-scientist studying the disorder. Since its earliest days it has been energized by its number-one volunteer and national chairman, entertainer Jerry Lewis.

The Association's programs are funded almost entirely by individual private contributors.

 

Ronald McDonald House

ronald mcdonald house

Many families travel far from home to get treatment for their seriously ill or injured children. The treatment may last a day, a month, or even longer. It's a long time to be away from home, or to divide a family.

Ronald McDonald Houses around the world offer families a way to stay together, in proximity to the treatment hospital, and be comfortable and cared for during their stay. Allow Families to Face the Weight of Illness Together Families are stronger when they are together, which helps in the healing process. By staying at a Ronald McDonald House, parents can also can better communicate with their child’s medical team and keep up with complicated treatment plans when needed.

Services for Families

At every House, families can enjoy:

  • Home-cooked meals
  • Private bedrooms
  • Playrooms for children

Depending on the House, these services may also be available:

  • Special suites for children with suppressed immune systems
  • Accredited education programs
  • Recreational activities
  • Non-clinical support services
  • Sibling support services
Read more...
 

SMA Foundation

sma foundation

The Spinal Muscular Atrophy (SMA) Foundation is committed to accelerating progress towards the development of a treatment or a cure for SMA by...

  • Building entrepreneurial collaborations with academic and industry discovery efforts
  • Funding novel preclinical and clinical research into SMA
  • Educating legislators, governmental agencies and the general public about the urgent need for focus and support of SMA research
  • Bridging the gap between clinicians, scientists, technology and the pharmaceutical industry

The SMA Foundation is funding research that makes a difference.

In an open letter to NIH Director Dr. Elias Zerhouni in 2003, 50 of the world’s leading scientists, includ-ing Nobel Laureate James Watson, agreed that “with funding of twenty to thirty million dollars annually, an effective therapy for spinal muscular atrophy can be achieved in the near term of five years or less.” The SMA Foundation has since allocated more than $50 million to the support of basic, translational and clinical research that will accelerate progress towards a treatment in the near-term, with special attention given to pilot studies and projects using novel approaches to SMA. Information on the Foundation’s grants program is available online at www.smafoundation.org Research partners of the Foundation currently include Columbia University, The Massachusetts General Hospital, The Ohio State University, Stanford University, Inserm and the University of Wurzburg. Corporate partners include CombinatoRx, Inc., Curis, Inc., Regeneron Pharmaceuticals, Inc., Psycho-Genics, Inc., and PTC Therapeutics, Inc. Read more...