Category: CF Community

The Boomer Esiason Foundation congratulates the Rocky Mountain Silhouettes — and team member Kelsie, who has cystic fibrosis — on their second-place finish in the popular “America’s Got Talent” television competition.

The Rocky Mountain Silhouettes are 42 kids from ages 3 to 19 that are technically trained in every style of dance plus acting, singing and tumbling. They are a part of the Rocky Mountain School of Dance, an award winning competitive performing arts studio from Denver, Colo. Team member Kelsie, 17, is yet another example of how people with CF are living, breathing and succeeding despite the disease.

Check out the amazing performance of the Silhouettes in the America’s Got Talent finals earlier this week …

Nick News with Linda Ellerbee hears from kids and families who have been affected by organ donation in the half-hour special, “A Gift of Life,” premiering Sunday, Sept. 18, at 9 p.m. (ET/PT) on Nickelodeon. Beginning Monday, Sept. 19, the special will be available on Nick.com and on iTunes as a free podcast.

There are more than 2,000 kids in the U.S. waiting for organ transplants because their own organs are failing. The success rate for people who have received donated organs is 80 to 90 percent, but the demand is higher than the number of donors.

“Organ donation isn’t an easy subject to discuss with family,” said Ellerbee. “But kids aren’t only the recipients. They are also donors, so it’s important for families to educate themselves on the topic. There may be an opportunity to save a life or even lives.”

Tyler, 17, from Grand Prairie, Texas, was born with cystic fibrosis and has been waiting seven months for a double lung and liver transplant. The hospital will alert him of a potential donor via a pager, which he checks every 5 to 10 minutes. “I’m fighting every day,” says Tyler. “I’m not a quitter. I have big plans…I’m going to be sad because somebody else’s organs that are inside me that passed away. But then again, it’s giving me an opportunity to live.” Tyler recently launched an e-book to educate multicultural audiences about organ donation and coping with serious illness.

Madison, 13, from Roanoke, Va., was healthy until she noticed her eyes had turned yellow. She was diagnosed with liver failure, and the only way for her to stay alive was a liver transplant. Her older brother, Jordan, 19, was a match to be a living donor, someone who can give part of an organ that regenerates while still functioning as they did before. Jordan says, “I was proud of myself. I gave my liver to one of the closest people to me, and I’d do it again in a heartbeat.”

“My donor’s name was Johnny Hernandez,” says Michael, 14, from Oakland, Calif. “He died at the age of 18 in a motorcycle accident.” In addition to sharing an interest in the Oakland Raiders, playing the same position in Pop Warner football and enjoying chocolate chip peanut butter ice cream, Michael now has Johnny’s liver. Michael and his mom now pay the gift forward with Mikey’s Meals, an organization they started to feed the homeless in Oakland, which has now fed over 4,000 people in the area.

After watching the movie, Seven Pounds, Santos, then 16, told his family he wanted to be an organ donor. He passed away two weeks later, and his mother honored his wish by donating his organs, saving four people’s lives. His sister, Kassandra, says, “It’s very sad losing a brother, a son, but you know there’s a good feeling that you gave the recipient a second chance of life and they’re living because of the organs that he donated.”

Nick News, produced by Lucky Duck Productions, is now in its 20th year and is the longest-running kids’ news show in television history. It has built its reputation on the respectful and direct way it speaks to kids about the important issues of the day. Over the years, Nick News has received more than 21 Emmy nominations and recently won its ninth Emmy Award for Under the Influence: Kids of Alcoholics in the category of Outstanding Children’s Nonfiction Program.

The deadline for Abbott’s CFChef Challenge recipe contest is September 28. Individuals living with cystic fibrosis, their families, friends, caregivers and others are invited to submit original recipes for a CF diet, or traditional recipes adapted to a CF diet, online at www.Chef4CF.com.

CFChef is a new online nutrition destination developed to help meet the unique nutritional needs of people living with cystic fibrosis. In addition to serving as an online nutrition resource, the CFChef program will allow those touched by CF to share and receive support through recipes and meal tips.

Many people living with CF are unable to properly digest food due to lack of digestive pancreatic enzymes, which may result in malnutrition. To get enough calories to promote normal weight gain and growth, individuals with CF may need to consume up to two times as many calories as a person without the disease.

“When cooking for someone with CF, you have to rethink the nutrition ‘rules’ that apply to the general population. ‘Low fat, low cal’ is not the goal,” explains Suzanne Michel, a registered dietitian at a leading children’s CF center in Philadelphia. “In my 30 years of working with people with CF, I’ve learned that mealtimes can be challenging for families. The CFChef resource addresses those needs, providing useful nutritional information, recipes and tips for people living with CF from infancy to adulthood.”

Submissions for the CFChef Challenge recipe contest will be accepted in four categories: breakfast, lunch, dinner and snack. The top recipes will be judged by a panel of experts including: Boomer Esiason, CF advocacy leader; Suzanne Michel, CF expert dietitian; Michael Symon, a Food Network “Iron Chef”; and Ali Christensen, “America’s Got Talent” contestant and CF patient.

“As a parent of a college-aged son with cystic fibrosis, I know how important nutrition is,” says Boomer Esiason, former NFL quarterback and CF advocate. “The CFChef program offers the opportunity for the CF community to connect and share creative recipes while receiving educational information about nutrition.” 

An exciting performance troupe comprised of young dancers, actors and tumblers — including one with cystic fibrosis — last night made it into the finals of the popular television show “America’s Got Talent.”

The Rocky Mountain Silhouettes are 42 kids from ages 3 to 19 that are technically trained in every style of dance plus acting, singing and tumbling. They are a part of the Rocky Mountain School of Dance, an award winning competitive performing arts studio from Denver, Colo.

Silhouettes member Kelsie, 17, has to deal with some challenges not faced by other members of the troupe. According to Kelsie’s biography on the Silhouettes website, she dances 30 hours a week and maintains a 4.0 GPA as a high school senior. She also has cystic fibrosis. Kelsie’s favorite phrase is “I have CF, CF doesn’t have me!”

Kelsie was diagnosed with cystic fibrosis at one month old. She works every day to stay healthy. She has an intensive medical regime that includes a minimum of two breathing treatments a day. The team at the Denver Children’s Hospital has worked with Kelsie throughout her life to make sure that her dance is a priority and a significant piece of her treatment plan. It has been said of Kelsie that when she hits the dance floor she leaves everything else outside of the studio. When she enters the room it is all about the dance, she demands to be treated like everyone else. Silhouettes Director Lynne Patton has commented that the trouble with Kelsie is getting her to stop, rest and breathe! Her Rocky Mountain family is there for her whether she is flying high in the studio or spending time in the hospital. She is surrounded by unconditional support and love, and the whole team dreams of a cure for CF. Kelsie hopes that her successes in dance and life will be inspiration for other kids facing the challenges of a life with cystic fibrosis.

The Rocky Mountain Silhouettes will face three other acts in the finals of NBC’s America’s Got Talent next week. View their impressive semi-finals performance below, and mark your calendar to watch them in the finals on Tuesday, September 13, at 9 p.m. Eastern.

“The Power of Two,” a feature documentary on twin sisters with cystic fibrosis, has been selected for a prestigious Oscar-qualifying documentary showcase and has captured the attention of Hollywood at Los Angeles screenings this week.

The powerful movie illustrates the intimate bond between Anabel Stenzel and Isabel Stenzel Byrnes, half-Japanese twin sisters who have survived double-lung transplants and emerged as authors, athletes and advocates for organ donation and those living with CF in the United States and Japan.

“The Power of Two” has been selected for DocuWeeks, the Oscar-qualifying documentary showcase presented by the International Documentary Association. Following a week-long run in Los Angeles (August 19-25), the film will screen 14 times during the week of August 26-September 1 at the IFC Center in New York.

“The Power Of Two” is the feature directorial debut from Academy Award nominated filmmaker Marc Smolowitz (“The Weather Underground” and “Trembling Before G-d”) and was produced by Twin Triumph Productions.

NEW YORK
 SCREENINGS
August 26 – September 1, 2011

IFC Center

323 Sixth Avenue at West Third Street

To purchase tickets: www.ifccenter.com/films/the-power-of-two/

Other screenings include:

BOULDER, CO
Life & Death Matters Film Festival
Saturday, September 3

SAN FRANCISCO, CA
Bay Area Premiere Gala
Saturday, September 10

RICHMOND, VA
United Network for Organ Sharing (UNOS) Public Screening
Tuesday, September 13

WASHINGTON, DC
Capitol Hill Screening
Wednesday, September 14
DC Premiere Gala
Thursday, September 15

AKRON, OH
Akron Film + Pixel Festival
Saturday, October 8

SAN DIEGO, CA
San Diego Asian Film Festival
Late October date TBA

SANTA FE, NM
Santa Fe Independent Film Festival
Late October date TBA

ST. GEORGE, UT
Red Rock Film Festival
Friday, November 11

For more information about the film and its screening dates/locations, and to watch the trailer, go to www.thepoweroftwomovie.com/.

Changing doctors is never easy. When you’re a teenager new to advocating for your own health care, or one who has a chronic illness like diabetes or cystic fibrosis, it can be even more challenging to make the transition.

A new clinical report provides detailed guidance to pediatricians, family physicians, and internists to support all adolescents, including those with special health care needs, as they transition to an adult model of health care. The clinical report, “Supporting the Health Care Transition From Adolescence to Adulthood in the Medical Home,” from the American Academy of Pediatrics (AAP), American Academy of Family Physicians (AAFP) and American College of Physicians (ACP), is published in the July 2011 issue of Pediatrics (published online June 27).

“Pediatricians have asked how to incorporate better transition supports into their busy practices, and the new clinical report with its detailed practice-level guidance will help show them the way,” said Carl Cooley, MD, FAAP, co-chair of the group who authored the report. “All youth and young adults deserve seamless access to a primary care medical home and any necessary specialty care through all of life’s transitions.”

“Finding adult primary and specialty care providers for youth with chronic conditions has been a challenge for pediatricians, youth and families,” said Paul J. Sagerman, MD, FAAP, co-chair of the authoring group. “As ‘best practice’ for both pediatric and adult clinicians, the new clinical report will improve access to adult health care.”

Ideally, children should transition to adult-oriented health care between the ages of 18 and 21 years. For adolescents seeing a pediatrician, the transition will involve choosing a new physician, transferring medical records, and communicating treatment histories and insurance information. Although adolescents seeing a family physician may stay in the same practice, they may still need to transfer specialty care to adult subspecialists.

“All adolescents face unique health issues and have complex needs when it comes to care, but this is particularly true for teens dealing with chronic disease or disability,” said Roland Goertz, MD, MBA, FAAFP, president of the AAFP. “Having a medical home can provide stability during this time of change, and this report provides excellent guidance for family physicians and their care teams to help young people and their families follow a healthy path to adulthood.”

The transition requires help from the doctors on both sides, including preparing the adolescent to take charge of his or her own health care. Most young people with chronic illnesses will survive into adulthood and will need to find physicians who are trained in treating those conditions.

“Internal medicine specialists and subspecialists are often not prepared for the medical and social support needs of young adults with chronic or rare health conditions,” said Michael S. Barr, MD, MBA, FACP, ACP’s Senior Vice President, Medical Practice Professionalism & Quality. “This paper calls for all transitions in care to be based on adequate preparation, proactive communication, and early engagement of patients, families, and referring and accepting physicians in the process. The paper also provides strategies and formulas to overcome common challenges.”

The report represents an extension of a 2002 consensus statement on health care transitions for young adults that was co-authored by the same three national medical organizations. An algorithm to walk physicians through the transition process is included. The report also coincides with the launch of a new National Health Care Transition Center. The center is funded by the U.S. Maternal and Child Health Bureau in the Health Resources and Services Administration, which works with pediatric and adult primary care practices to develop tools to implement the specific guidance outlined in the report. For more information, visit http://www.gottransition.org/

Source: American Academy of Pediatrics

U.S. News Media Group has posted the 2011-12 Best Children’s Hospitals rankings online at www.usnews.com/childrenshospitals.

The new rankings recognize the top 50 children’s hospitals in 10 specialties: cancer, cardiology and heart surgery, diabetes and endocrinology, gastroenterology, neonatology, nephrology, neurology and neurosurgery, orthopedics, pulmonology, and urology. Seventy-six hospitals are ranked in at least one specialty. The Honor Roll lists 11 hospitals that ranked at or near the top in four or more specialties. The rankings will also be published in the U.S. News Best Hospitals print guide that will go on sale in August.

According to the U.S. News rankings, the top 10 children’s hospitals for pulmonology are: Children’s Hospital of Philadelphia, Cincinnati Children’s Hospital Medical Center, Children’s Hospital Boston, Children’s Hospital Colorado, Texas Children’s Hospital, St. Louis Children’s Hospital – Washington University, Children’s Hospital of Pittsburgh of UPMC, Rainbow Babies and Children’s Hospital (Cleveland), Johns Hopkins Children’s Center and North Carolina Children’s Hospital at UNC.

Best Children’s Hospitals, now in its fifth year, is an invaluable resource for parents and families of sick children, highlighting survival rates, adequacy of nurse staffing, procedure volume, and many more types of critical information hard or impossible to find any other way. The analysis includes the opinions of pediatric specialists across the country who were asked by U.S. News to name the hospitals where they would send their most challenging patients.

“It’s much harder for parents and others caring for a child to dig out important facts about pediatric quality of care than it is to find similar information about hospitals’ quality of care for adults, and that’s just out of whack,” says Health Rankings Editor Avery Comarow. “Children with serious medical issues need nothing less than the best care available. Best Children’s Hospitals calls attention to pediatric centers that have the expertise to help kids whose medical problems are uniquely difficult. We want them to be where they can get the best care.”

U.S. News surveyed nearly 180 children’s hospitals to obtain the data that made up 75 percent of the rankings; a separate reputational survey of 1,500 pediatric specialists made up the remaining 25 percent. The 25 percent weight given to reputation is down from 35 percent in last year’s rankings. That’s because children’s hospitals have gotten better at collecting and tracking data on their performance, a trend given a boost by the Best Children’s Hospitals rankings, in the view of many experts. More data that directly reflect how well hospitals do at treating children and minimizing the risks they face just from being hospitalized—figures on survival, complications, and infection prevention, for example—are now available for analysis.

Most candidates for Best Children’s Hospitals were members of the National Association of Children’s Hospitals and Related Institutions (NACHRI) and were a freestanding children’s hospital, a “hospital within a hospital”—a collection of large, multidisciplinary pediatric departments within a medical center—or were affiliated with a medical school. Several non-NACHRI members were added because of specific expertise or at experts’ recommendation.

The Honor Roll

The Honor Roll recognizes the 11 hospitals that excelled in four or more specialties.

1. Children’s Hospital Boston

1. Children’s Hospital of Philadelphia

3. Cincinnati Children’s Hospital Medical Center

4. Texas Children’s Hospital, Houston

5. Children’s Hospital Colorado, Denver

5. Johns Hopkins Children’s Center, Baltimore

7. Seattle Children’s Hospital

8. Children’s Hospital Los Angeles

8. Children’s Hospital of Pittsburgh of UPMC

8. New York-Presbyterian Morgan Stanley-Komansky Children’s Hospital, N.Y.

8. St. Louis Children’s Hospital-Washington University

RTI International, the research organization that also oversees the Best Hospitals rankings, created the 2011-12 Best Children’s Hospitals methodology with the help of more than 100 physicians including medical directors, pediatric specialists, and other experts and administered the hospital and physician surveys. A detailed description can be found at www.usnews.com/childrenshospitals.

Source: U.S. News Media Group press release

May is CF Awareness Month, and throughout the month, Gilead Sciences invites you to show your commitment to the cystic fibrosis community by taking the “What’s Your CF IQ?” online quiz.

For each quiz completed during May 2011, Gilead will donate $5 – up to a total of $10,000 – across three CF organizations: the Boomer Esiason Foundation, the Cystic Fibrosis Foundation and Cystic Fibrosis Research Inc.

To take the quiz, go to www.cfawarenessmonth.com.

It’s fast. It’s fun. And it’s for a great cause.