Christmas Tree Jubilee Kicks Off the Season and Helps Children in Need

The Christmas season kicked off in Ogden, Utah this weekend with their annual Christmas Tree Jubilee – an annual fundraiser that auctions donated Christmas trees to the community. The annual event began in 1980 and has been helping disabled children in the area ever since. The fundraiser involves community members decorating and donating hundreds of Christmas trees that are eventually auctioned off through live and silent auctions. The proceeds are then used to provide appropriate equipment to special needs children in two different school districts.

With average prices of the live auction balancing out at $2,000 per tree and average prices of $700-$800 for the silent auction, the Christmas Tree Jubilee has been able to buy children in need necessary equipment such as wheelchairs, educational supplies, and communication devices. As Kathleen Alder, a co-chair for the Christmas Tree Jubilee, said “We buy everything from wheelchairs and speaking devices to lifts,” Alder said. “All things that help kids become more independent in our society.”

Steroids used in Preemies May Kill Brain Cells

According to recent animal studies, conducted by scientists at the Washington University School of Medicine in St. Louis, certain drugs used in premature babies and in pregnant women at risk for preterm deliveries kill brain cells. The class of steroids known as glucocorticoids which is often used to beef up the underdeveloped lungs of premature infants, irreversibly damages brain cells in the cerebellums of baby mice — the area of the brain responsible for coordination and balance.

Researchers also identified a time frame during which newborn babies’ brains appear most vulnerable to the steroids. In the study, brain cells in mice died after treatments that were given 4 to 10 days after birth, says study author Kevin Noguchi. He also added that danger zone translates to human babies from about 20 weeks in the womb to six weeks after birth.

Noguchi says other studies have shown that the synthetic steroid, dexamethasone, causes later motor and cognitive problems in children. Due to that research, in 2002, the American Academy of Pediatrics recommended that postnatal glucocorticoid use be halted, but the drugs are still used regularly in mothers at risk for early deliveries. The researchers have also studied adolescent mice that were treated with glucocorticoids during early infancy, and reported that a single exposure to the medication permanently damaged the cerebellums of the animals’ brains.

However, researchers found that the toxic effects of the steroid drugs they studied do not appear to affect the brains of older babies, children and adults. “Our studies in mice suggest that once a human infant is a few months old, these drugs — which are used for other medical conditions, too — don’t appear to have this type of toxic effect,” said Co-author Nuri Farber.

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Almost Thanksgiving Dinner

For the past five years, Tabbie Ross, Camp Allyn residential program coordinator, has been helping disabled children and young adults host Thanksgiving dinner a bit early for their families in an event known as “Almost Thanksgiving Dinner.”

“One of the rights of passage for adults is having your parents over for dinner. This is a chance to be the host, to throw your own dinner party. As much as possible, this is camper driven. It’s their meal to present to their parents,” said Ross.

Parents of the children have noticed the growth and feeling of independence the program gives their children from year to year. For instance, Desiree Hensley says her 22-year-old son, Willie, has blossomed since he started coming there. “He loves it. Each year he’s more independent. You can see the maturity coming out,” she said.

This year there was 19 cooks - 17 of them were young adults and 2 were children. They prepared a full meal of turkey, cornbread, and pumpkin pie. The camp staff put the turkey in the oven but other than that, the 19 cooks handled the cooking duties all by themselves.

Army Medical Center Excels in CP Treatment

San Antonio Military Medical Complex in San Antonio, Texas, provides comprehensive treatment for adults and children suffering from cerebral palsy. The clinic is staffed by a team of medical specialists who provide a multidisciplinary approach to treating the condition. “Our treatment is a team effort combining the expertise of pediatricians, orthopedic surgeons, physical, occupational and speech therapists, social workers, neurologists, neurosurgeons, educators and nutritionists,” said Maj. (Dr.) Brian Faux, a pediatric neurologist at San Antonio Military Medical Complex. “So many specialists are involved with each patient, including staff from Brooke Army Medical Center at Fort Sam Houston in San Antonio.”

Among the treatments available to patients are implantable pumps that dispense a continuous dose of medication to help reduce cerebral palsy symptoms. In July 2008, 20-year-old Andy Smith underwent this procedure with impressive results. “Before the pump, I could hardly use my right hand, could not stand upright, and needed help with almost everything, even using the restroom,” said Mr. Smith, who is a student at the University of Texas, San Antonio, and was diagnosed with cerebral palsy at age 2. “Now, I can use my hand, allowing me to do simple things most people take for granted. My typing speed has doubled, which really helps with my classes. I can stand and hopefully will be able to move from a wheelchair to crutches and then a walker soon.”

The San Antonio Military Medical Complex clinic was designated a center of excellence for cerebral palsy treatment and has implanted 15 pumps into children in the last five years. The clinic is the only Department of Defense medical facility providing this type of comprehensive treatment.

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The Apartment: Admit One to Adulthood

Greg Hudson was diagnosed with cerebral palsy at the age of 2. His parents were told that it was quite possible that Greg may never learn to walk or talk. Greg, however, would defy all odds against him and has even gone on to star in the documentary, “The Apartment: Admit One to Adulthood,” a 28 minute documentary is that focuses on Greg and other students of the U-32 Montpelier Apartment Program (UMAP). The UMAP program was founded and directed by Karen Noone and its primary focus is on students with developmental disabilities; to nurture independence and further achievement after completing 12 years of schooling.

Over a year ago, Noone went to Steve Barrows, an English and film teacher whose son is a student in the UMAP program, and discussed how they could generate some interest in the program. Barrows suggested a documentary and from there he hit the ground running. Barrows received a $10,000 grant from the Vermont Developmental Disabilities Council, which allowed him to retrieve past and present footage from the UMAP program. Barrows dedicated nearly 60 hours editing footage and telling the story of UMAP.

“I think this film will open up the eyes for everyone who sees it,” said Max Barrows, Steve’s son, who was one of the program’s first students. “It was a little hard to adjust to the apartment program. As time went on I finally figured things out… I could use the apartment program to learn what I needed to do to move out on my own.” Max has spoken to the Vermont legislature about how important integrated education is for children with developmental disabilities. Max is 22, and quite shy about the fact that he suffers from autism, but thanks in large part to the UMAP program, Max has become a much more confident person. “I feel like I am definitely more confident. I feel a greater will to take things on.” 

The executive director of the Vermont Developmental Disabilities Council, Karen Schwartz, was at the premier of the film and explained why they felt it was important to award the $10,000 grant to the project. “It’s a catalyst to have similar programs around the state,” she said. “I thoroughly enjoyed it and I think that the young people in it will touch people’s hearts and impress them to invest in their futures.”

Camp Independence to Help Children With Disabilities

There will be a 4,500 square foot facility built in Ingleside, Illinois to accommodate the Camp Independence project, which is aimed to help children with disabilities live more independently, while having fun in a camp environment as well. The project is collaboration between three different organizations; the YMCA of Metropolitan Chicago, The Village Foundation, and Camp Friends.

The facility will be equipped with 8 fully handicapped-accessible bathrooms, a living area with enough beds for 16 campers, and a large common area for activities. There will also be a kitchen that is only partially handicapped-accessible, in order to teach the campers how to cook and maneuver in a non-accessible kitchen. “We need to really be able to teach independence,” said Chris Bielat of YMCA of Metropolitan Chicago. “Campers need to learn how to … live in an environment that isn’t 100 percent accessible.”

Beginning next fall, there will be 10 different camp sessions hosted at new campgrounds. The sessions will be free of charge to the participants, and 16 campers will be allowed to participate in each session.If you would like any more information on Camp Independence you can call 847-546-8086.

Fertility Procedures Could Cause Birth Defects

A study conducted by Dr. Jennita Reefhuis, an epidemiologist at the Centers for Disease Control and Prevention, suggests that infants who were conceived with techniques commonly used in fertility clinics are 2 to 4 times more likely to be born with certain birth defects. The study suggests that babies conceived in this fashion are more likely to suffer heart problems, cleft lip, cleft palate, abnormalities in the esophagus and the rectum as well. In one particular instance, cleft lip, it is believed that 1 out of every 950 births in the United States are affected. However, according to the study, the odds nearly double if fertility clinic techniques are used - to 1 out of every 425 births.

According to the study, procedures such as in vitro fertilization in which doctors work with the egg and sperm outside of the body, are the likely cause for the increased risk of birth defects. The findings only apply to single births and not twins or any other multiple births. The study did not include women who were using fertility drugs. 

Doctors agree that more has to be done with the study, as it proves no connection between the procedures and birth defects, and it could just be a matter of the infertility causing the birth defects. Dr. James A. Grifo, director of the fertility clinic at New York University Medical Center said, “The results are concerning, but with this small a sample of patients, a bigger study would need to be done,” Dr. Grifo said. “And the fact that they see it in singletons, not in twins, makes it hard for me to think this is a direct relationship.”

UCSF Opens Innovative Clinic Focusing on the Infant Brain

The University of California, San Francisco (UCSF) Children’s Hospital has opened an innovative new clinical unit focusing on the infant brain that is the first facility of its kind in the United States. The unit brings together specialized treatment and clinical research for infants who show signs of brain damage at birth and are at-risk for developing cerebral palsy, mental retardation and other cognitive disorders. The facility, named the Neuro-Intensive Care Nursery (NICN) will also host clinical trials and bring the latest cutting-edge treatments to patients.

“My hope is that by bringing scientists and clinicians together in the NICN we will be able to establish the root causes of brain damage in infants so that we can offer patients and their families real therapeutic options,” said David Rowitch, director of the NICN. “Our highly skilled team of experts is well-equipped to address the critical need for improved care of the infant brain,” said Sam Hawgood, MB, BS, chair of the UCSF Department of Pediatrics. “By offering the most advanced treatments and hosting clinical trials, the new NICN is positioned to have a tremendous impact on care today and for years to come.”

One treatment now used by the NICN team is hypothermia, which involves cooling a newborn’s brain and body by a few degrees immediately after birth. Research has shown that hypothermia treatment within the first six hours of an infant’s life can help prevent or minimize the long-term consequences of brain damage caused by a loss of oxygen during birth. Hypothermia treatments, however, have only been tested in full-term infants.

Another key component of the new NICN is the use of an advanced neonatal brain monitoring system, called cerebral function monitoring or amplitude integrated electroencephalography (aEEG), which provides a window into the brain activity of newborns. “By monitoring the electrical function of the newborn brain under various conditions of illness and stress, we will gain a better understanding of how our treatments affect brain function and the risk of injury. This, in turn, will lead to better treatments to optimize neurological outcome,” said Yao Sun, MD, PhD, director of neonatal clinical programs at UCSF.

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Performing Gives Children Confidence

Megan Rosener, 14, has always loved to sing, but had always been hesitant to perform in front of a crowd because of her cerebral palsy. However, now thanks to the Life Long Dreams program, Megan is a much more confident performer. Furthermore, she is now participating in the classroom, extra curricular activities, and even doing volunteer work only after a few months in the program.

Life Long Dreams is a nonprofit organization for children with physical and learning disabilities. It gives the children an opportunity to dance, sing, and act. The group was founded last December by Cathy Warriner and Tshlene Henreid. Henreid was, at one time, a professional dancer until she was stricken with rheumatoid arthritis, and confined to a wheel chair. She admits that her life is now different, but not worse by any means. After being diagnosed, Henreid spent 11 years as a talent agent in Los Angeles. She then moved to Las Vegas and within 6 months, she had organized the “Wish Upon a Star” talent show for children with disabilities and chronic health issues. It was there that she met Cathy Warriner, the mother of a child with Down syndrome.

Warriner and Henreid were so inspired by the enthusiasm and stage presence of the performers they created the Life Long Dreams organization.

“I wanted people to know that no matter what, no matter what special need or challenge you have that it’s here in our hearts and our minds if we want to overcome something. We don’t have to be great at it, we just need to do what we love,” Henreid said.

Now Henreid has also founded the Cypress Entertainment Co., to represent children with special needs using her contacts in Hollywood. Henreid and Warriner hope to expand the Life Long Dreams organization to include a touring group and open franchises around the world to help other children realize their dreams.

U.S. Receives “D” for Preterm Birth Rates

The March of Dimes’ released their first annual Premature Birth Report Card today, and the results were less than satisfactory. When it comes to premature birth rates, the United States rates a “D,” and 18 states plus Puerto Rico and the District of Columbia get failing grades. Not a single state earned an “A.” The best grade that was received was Vermont, which received a “B.” Moreover, 23 states were given a “D.”

Last week we wrote about November being Prematurity Awareness Month and today marked the sixth annual Prematurity Awareness Day. Premature birth affects more than 530,000 babies each year in the United States. “It is unacceptable that our nation is failing so many preterm babies. We are determined to find and implement solutions to prevent preterm birth, based on research, best clinical practices, and improved education for moms,” March of Dimes President Dr. Jennifer L. Howse said in a news release.

To develop the report card, the March of Dimes compared actual preterm birth rates to the national Healthy People 2010 objective of lowering the preterm birth rate to 7.6 percent of all live births. The U.S. preterm birth rate was 12.7 percent in 2005, the most recent year for which statistics are available. Since 1990, the preterm birth rate in the United States has risen about 20 percent, and preterm births cost the nation more than $26 billion a year, according to a 2006 Institute of Medicine report. In addition to state rankings, the report card also analyzed several factors that contribute to preterm birth, including smoking, uninsured women of childbearing age, and prevention measures.

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