http://esiason.org/index.php/site/index/ This is where CF news would be posted. en rim50@aol.com Copyright 2010 2010-09-03T16:03:27+00:00 http://esiason.org/index.php/site/newsevents/news/next_stop_for_cf_family_days_new_york_city/ http://esiason.org/index.php/site/newsevents/news/next_stop_for_cf_family_days_new_york_city/#When:15:03:27Z Each year, the Boomer Esiason Foundation hosts a series of CF Family Days across the country to provide awareness, education and support for families dealing with cystic fibrosis. The free 90-minute programs, made possible by a grant to BEF from Eurand, feature Boomer speaking about his experiences as a CF parent. Boomer will stay close to home this month for a CF Family Day in New York City. This event will be co-hosted by Dr. Emily DiMango, Director of the Adult Cystic Fibrosis Program at Columbia University Medical Center. CF FAMILY DAY IN NEW YORK CITY Date: Tuesday, September 21, 2010 Time: 6:30 p.m. to 8:30 p.m. (includes dinner) Location: Morgan Stanley Children’s Hospital at Columbia University Medical Center (McIntosh Conference Room - Room 113 - 3959 Broadway, New York, NY 10032) For more information or to RSVP for this free event, please contact Michael Buscemi at 516.746.0077 or mbbef@aol.com by September 17. Click here to view a flier on the September 21 CF Family Day in New York City. Each year, the Boomer Esiason Foundation hosts a series of CF Family Days across the country to provide awareness, education and support for families dealing with cystic fibrosis. The free 90-minute programs, made possible by a grant to BEF from Eurand, feature Boomer speaking about his experiences as a CF parent. Boomer will stay close to home this month for a CF Family Day in New York City. This event will be co-hosted by Dr. Emily DiMango, Director of the Adult Cystic Fibrosis Program at Columbia University Medical Center. CF FAMILY DAY IN NEW YORK CITY Date: Tuesday, September 21, 2010 Time: 6:30 p.m. to 8:30 p.m. (includes dinner) Location: Morgan Stanley Children’s Hospital at Columbia University Medical Center (McIntosh Conference Room - Room 113 - 3959 Broadway, New York, NY 10032) For more information or to RSVP for this free event, please contact Michael Buscemi at 516.746.0077 or mbbef@aol.com by September 17. Click here to view a flier on the September 21 CF Family Day in New York City. 2010-09-03T15:03:27+00:00 http://esiason.org/index.php/site/newsevents/news/new_podcast_relationships_and_cf/ http://esiason.org/index.php/site/newsevents/news/new_podcast_relationships_and_cf/#When:16:18:18Z The latest podcast from Boomer Esiason Foundation Volunteer Jerry Cahill features a chat with 21-year-old Bryan Pendarvis, a college student with cystic fibrosis who’s trying to “live a normal life,” which includes dating. Click here to go to Jerry’s web site and download the podcast. In this candid discussion about the ups and downs of relationships when you have cystic fibrosis, Bryan tells Jerry he looks for “someone who is compassionate, communicates and is willing to understand.” Bryan says when telling someone he is dating about the disease, he first wants “her to get to know me for who I am, and secondly for cystic fibrosis. When the time is right, I start with the basics and do not overwhelm them.” Family relationships are important to Bryan, too. His older brother, Shaun, passed away from CF a little more than a year ago. “My brother taught me how to live with CF and that it should NOT hold you back,” Bryan says. In addition, “my mom is always there for me and helps me overcome obstacles.” “Family is what matters,” Bryan concludes. To help make this interview one of Podcast Alley’s top-rated health podcasts:   1. Go to www.jerrycahill.com   2. Scroll down on left side to “Email Address,” type in your email address and hit “Vote Now”   3. You will get an email response   4. Respond to the email to activate your vote This “LIVING. BREATHING. SUCCEEDING.” Podcast/Vodcast is the 1st in a series of 12 made possible through an unrestricted educational grant from Genentech to The Boomer Esiason Foundation. The latest podcast from Boomer Esiason Foundation Volunteer Jerry Cahill features a chat with 21-year-old Bryan Pendarvis, a college student with cystic fibrosis who’s trying to “live a normal life,” which includes dating. Click here to go to Jerry’s web site and download the podcast. In this candid discussion about the ups and downs of relationships when you have cystic fibrosis, Bryan tells Jerry he looks for “someone who is compassionate, communicates and is willing to understand.” Bryan says when telling someone he is dating about the disease, he first wants “her to get to know me for who I am, and secondly for cystic fibrosis. When the time is right, I start with the basics and do not overwhelm them.” Family relationships are important to Bryan, too. His older brother, Shaun, passed away from CF a little more than a year ago. “My brother taught me how to live with CF and that it should NOT hold you back,” Bryan says. In addition, “my mom is always there for me and helps me overcome obstacles.” “Family is what matters,” Bryan concludes. To help make this interview one of Podcast Alley’s top-rated health podcasts:   1. Go to www.jerrycahill.com   2. Scroll down on left side to “Email Address,” type in your email address and hit “Vote Now”   3. You will get an email response   4. Respond to the email to activate your vote This “LIVING. BREATHING. SUCCEEDING.” Podcast/Vodcast is the 1st in a series of 12 made possible through an unrestricted educational grant from Genentech to The Boomer Esiason Foundation. 2010-08-30T16:18:18+00:00 http://esiason.org/index.php/site/newsevents/news/cf_sisters_advance_to_finals_in_americas_got_talent/ http://esiason.org/index.php/site/newsevents/news/cf_sisters_advance_to_finals_in_americas_got_talent/#When:20:03:51Z Two sisters with cystic fibrosis have been voted into the finals on NBC’s “America’s Got Talent,” and are one step closer to winning $1 million and headlining a show in Las Vegas. Ali and Christina Christensen, from Idaho Falls, Idaho, charmed the show’s celebrity judge panel in preliminary rounds and then won over a national audience to get into the semi-finals.  But Christina, 13, and Ali, 20, almost missed the cut this week when the voting was so close, the show’s judges were called upon to decide whether they would advance to the finals. “You’ve got to hurry, we’re almost off the air,” host Nick Cannon urged the judges. “Okay, okay ... do I break two hearts or one?” judge Sharon Osbourne said. “I’m going to break one, and I’m going to go with Christina and Ali.” “America’s Got Talent” airs Tuesday and Wednesday nights at 9/8c on NBC. Ten acts will compete in the finals for the cash prize and a year-long show in Las Vegas. Two sisters with cystic fibrosis have been voted into the finals on NBC’s “America’s Got Talent,” and are one step closer to winning $1 million and headlining a show in Las Vegas. Ali and Christina Christensen, from Idaho Falls, Idaho, charmed the show’s celebrity judge panel in preliminary rounds and then won over a national audience to get into the semi-finals.  But Christina, 13, and Ali, 20, almost missed the cut this week when the voting was so close, the show’s judges were called upon to decide whether they would advance to the finals. “You’ve got to hurry, we’re almost off the air,” host Nick Cannon urged the judges. “Okay, okay ... do I break two hearts or one?” judge Sharon Osbourne said. “I’m going to break one, and I’m going to go with Christina and Ali.” “America’s Got Talent” airs Tuesday and Wednesday nights at 9/8c on NBC. Ten acts will compete in the finals for the cash prize and a year-long show in Las Vegas. 2010-08-26T20:03:51+00:00 http://esiason.org/index.php/site/newsevents/news/luminex_announces_commercial_launch_of_new_cf_genetic_screening_test/ http://esiason.org/index.php/site/newsevents/news/luminex_announces_commercial_launch_of_new_cf_genetic_screening_test/#When:20:00:14Z Luminex Corporation, the worldwide leader in multiplexed solutions, announced the full commercial launch of its xTAG® Cystic Fibrosis 60 Kit v2, a new diagnostic test that can simultaneously screen a single blood sample for up to 60 cystic fibrosis-causing genetic mutations in a matter of hours. The test is the most comprehensive and flexible FDA-cleared cystic fibrosis (CF) test available, featuring an unsurpassed level of gene mutation coverage. It will be used to screen potential parents to determine if they are carriers of CF-causing gene mutations, and as an aid in newborn screening and in confirmatory diagnostic testing in newborns and children. The test recently received 510(k) clearance from the U.S. Food and Drug Administration (FDA). “The launch of our new xTAG Cystic Fibrosis 60 Kit v2 is a great achievement in cystic fibrosis testing,” said Patrick J. Balthrop, president and chief executive officer of Luminex. “This cleared test has the most comprehensive genetic mutation coverage available today, featuring mutations found among Caucasians as well as those that are more commonly found in other ethnic populations. It will give doctors the ability to screen children and potential parents of many ethnicities for CF.” Cystic fibrosis is a common genetic disorder that causes the body to produce thick mucus that can clog the lungs and affect the digestive system. Approximately 30,000 Americans have cystic fibrosis. Although CF is most common in those of Caucasian descent, it can affect people of any race or ethnicity. CF is caused by mutations in the CF transmembrane conductance regulator (CFTR) gene. To date, more than 1,500 of these mutations have been discovered(i). CF can only be passed onto a child when both parents carry a gene that causes the disease. According to the Cystic Fibrosis Foundation, more than 10 million Americans are symptomless carriers of CF-causing gene mutations. Early diagnosis of CF is important and studies have demonstrated that early treatment and intervention can reduce a child’s therapeutic needs, lower rates of medical complications, increase life expectancy and improve overall quality of life. Late diagnosis of cystic fibrosis can lead to health complications, chronic lung infections and compromised growth. The xTAG Cystic Fibrosis 60 Kit v2 can detect up to 60 CFTR gene mutations from a single patient blood sample. These mutations include the 23 CFTR gene mutations and four variants (polymorphisms) recommended by the American College of Medical Genetics (ACMG) and American College of Obstetricians and Gynecologists (ACOG), as well as 37 additional common North American mutations, including 20 mutations that are found within Hispanic and African-American populations. The xTAG Cystic Fibrosis 60 Kit v2 is flexible. It gives physicians the ability to select the mutations for which they want to test, allowing them to choose to test a patient for the ACMG/ACOG-recommended gene mutations or the entire panel of 60 CFTR gene mutations. The test also is easy to use and requires only about one hour of hands-on time to process 48 purified samples. Additionally, the xTAG Cystic Fibrosis 60 Kit v2 does not require reflex testing. All test results are revealed and available for analysis at each run. The xTAG Cystic Fibrosis 60 Kit v2 is one of a suite of CF tests developed by Luminex. The xTAG Cystic Fibrosis 39 Kit v2, which can simultaneously screen a single blood sample for up to 39 cystic fibrosis-causing gene mutations, is available throughout the U.S., Europe and Canada. The test is also cleared by FDA and was launched as a CE marked IVD product under the European Directive on In Vitro Diagnostic Medical Devices in 2009. It received clearance from Health Canada in 2010. The xTAG Cystic Fibrosis 71 Kit v2, which can simultaneously screen a single blood sample for up to 71 cystic fibrosis-causing gene mutations, is available in Europe and Canada. The test became a CE marked IVD product in 2009 and was cleared by Health Canada in 2010. The xTAG Cystic Fibrosis 60 Kit v2 will be available throughout the United States through Luminex Molecular Diagnostics or Fisher HealthCare, part of Thermo Fisher Scientific, Inc. For more information, please visit http://www.luminexcorp.com/cf. Luminex Corporation, the worldwide leader in multiplexed solutions, announced the full commercial launch of its xTAG® Cystic Fibrosis 60 Kit v2, a new diagnostic test that can simultaneously screen a single blood sample for up to 60 cystic fibrosis-causing genetic mutations in a matter of hours. The test is the most comprehensive and flexible FDA-cleared cystic fibrosis (CF) test available, featuring an unsurpassed level of gene mutation coverage. It will be used to screen potential parents to determine if they are carriers of CF-causing gene mutations, and as an aid in newborn screening and in confirmatory diagnostic testing in newborns and children. The test recently received 510(k) clearance from the U.S. Food and Drug Administration (FDA). “The launch of our new xTAG Cystic Fibrosis 60 Kit v2 is a great achievement in cystic fibrosis testing,” said Patrick J. Balthrop, president and chief executive officer of Luminex. “This cleared test has the most comprehensive genetic mutation coverage available today, featuring mutations found among Caucasians as well as those that are more commonly found in other ethnic populations. It will give doctors the ability to screen children and potential parents of many ethnicities for CF.” Cystic fibrosis is a common genetic disorder that causes the body to produce thick mucus that can clog the lungs and affect the digestive system. Approximately 30,000 Americans have cystic fibrosis. Although CF is most common in those of Caucasian descent, it can affect people of any race or ethnicity. CF is caused by mutations in the CF transmembrane conductance regulator (CFTR) gene. To date, more than 1,500 of these mutations have been discovered(i). CF can only be passed onto a child when both parents carry a gene that causes the disease. According to the Cystic Fibrosis Foundation, more than 10 million Americans are symptomless carriers of CF-causing gene mutations. Early diagnosis of CF is important and studies have demonstrated that early treatment and intervention can reduce a child’s therapeutic needs, lower rates of medical complications, increase life expectancy and improve overall quality of life. Late diagnosis of cystic fibrosis can lead to health complications, chronic lung infections and compromised growth. The xTAG Cystic Fibrosis 60 Kit v2 can detect up to 60 CFTR gene mutations from a single patient blood sample. These mutations include the 23 CFTR gene mutations and four variants (polymorphisms) recommended by the American College of Medical Genetics (ACMG) and American College of Obstetricians and Gynecologists (ACOG), as well as 37 additional common North American mutations, including 20 mutations that are found within Hispanic and African-American populations. The xTAG Cystic Fibrosis 60 Kit v2 is flexible. It gives physicians the ability to select the mutations for which they want to test, allowing them to choose to test a patient for the ACMG/ACOG-recommended gene mutations or the entire panel of 60 CFTR gene mutations. The test also is easy to use and requires only about one hour of hands-on time to process 48 purified samples. Additionally, the xTAG Cystic Fibrosis 60 Kit v2 does not require reflex testing. All test results are revealed and available for analysis at each run. The xTAG Cystic Fibrosis 60 Kit v2 is one of a suite of CF tests developed by Luminex. The xTAG Cystic Fibrosis 39 Kit v2, which can simultaneously screen a single blood sample for up to 39 cystic fibrosis-causing gene mutations, is available throughout the U.S., Europe and Canada. The test is also cleared by FDA and was launched as a CE marked IVD product under the European Directive on In Vitro Diagnostic Medical Devices in 2009. It received clearance from Health Canada in 2010. The xTAG Cystic Fibrosis 71 Kit v2, which can simultaneously screen a single blood sample for up to 71 cystic fibrosis-causing gene mutations, is available in Europe and Canada. The test became a CE marked IVD product in 2009 and was cleared by Health Canada in 2010. The xTAG Cystic Fibrosis 60 Kit v2 will be available throughout the United States through Luminex Molecular Diagnostics or Fisher HealthCare, part of Thermo Fisher Scientific, Inc. For more information, please visit http://www.luminexcorp.com/cf. 2010-08-26T20:00:14+00:00 http://esiason.org/index.php/site/newsevents/news/vote_for_bef_in_chobani_yogurts_nothing_but_good_charity_program/ http://esiason.org/index.php/site/newsevents/news/vote_for_bef_in_chobani_yogurts_nothing_but_good_charity_program/#When:19:43:15Z Chobani Yogurt has accepted the Boomer Esiason Foundation into “Nothing But Good,” a charitable giving program under which Chobani donates 10% of its annual profits to nonprofit organizations that align with the company’s own mission. The allocation of Chobani’s donations to the charities are made based on feedback from its board and from consumers. The Chobani web site includes brief write-ups on accepted charities that do work in the areas of health, the environment and “good.” Consumers may vote for a charity using the “Spread Some Good Here!” button under the organization’s description. The Boomer Esiason Foundation encourages the CF community to cast a vote for BEF on the Chobani web site (www.chobani.com). Donations we receive from companies like Chobani are directed toward our programs benefiting the CF community. Chobani Yogurt has accepted the Boomer Esiason Foundation into “Nothing But Good,” a charitable giving program under which Chobani donates 10% of its annual profits to nonprofit organizations that align with the company’s own mission. The allocation of Chobani’s donations to the charities are made based on feedback from its board and from consumers. The Chobani web site includes brief write-ups on accepted charities that do work in the areas of health, the environment and “good.” Consumers may vote for a charity using the “Spread Some Good Here!” button under the organization’s description. The Boomer Esiason Foundation encourages the CF community to cast a vote for BEF on the Chobani web site (www.chobani.com). Donations we receive from companies like Chobani are directed toward our programs benefiting the CF community. 2010-08-24T19:43:15+00:00 http://esiason.org/index.php/site/newsevents/news/new_cf_wind_sprint_using_an_oxygen_tank_while_exercising/ http://esiason.org/index.php/site/newsevents/news/new_cf_wind_sprint_using_an_oxygen_tank_while_exercising/#When:16:00:30Z The Boomer Esiason Foundation has posted Episode 7 of the Cystic Fibrosis Wind Sprint series. This short-format video discusses how an oxygen tank can help keep oxygen saturation at optimal levels while exercising. BEF launched CF Wind Sprints in May 2010. The series of brief videos, hosted by Jerry Cahill, BEF’s Volunteer Director for Education & Team Boomer, address a variety of topics, including traveling, nutrition, exercise and treatments. BEF invites the CF community to submit questions and topics for CF Wind Sprints via its Facebook fan page or on Twitter. Previous CF Wind Sprints include: Episode 1: Introduction to CF Wind Sprints Episode 2: Sterilizing Nebulizers Episode 3: Exercising at Home and in the Hospital Episode 4: Sinus Irrigation Episode 5: A Recipe for Maintaining Your Weight Episode 6: Using a Percussor for Airway Clearance The Boomer Esiason Foundation has posted Episode 7 of the Cystic Fibrosis Wind Sprint series. This short-format video discusses how an oxygen tank can help keep oxygen saturation at optimal levels while exercising. BEF launched CF Wind Sprints in May 2010. The series of brief videos, hosted by Jerry Cahill, BEF’s Volunteer Director for Education & Team Boomer, address a variety of topics, including traveling, nutrition, exercise and treatments. BEF invites the CF community to submit questions and topics for CF Wind Sprints via its Facebook fan page or on Twitter. Previous CF Wind Sprints include: Episode 1: Introduction to CF Wind Sprints Episode 2: Sterilizing Nebulizers Episode 3: Exercising at Home and in the Hospital Episode 4: Sinus Irrigation Episode 5: A Recipe for Maintaining Your Weight Episode 6: Using a Percussor for Airway Clearance 2010-08-23T16:00:30+00:00 http://esiason.org/index.php/site/newsevents/news/bef_awards_10000_scholarships_to_two_student-athletes/ http://esiason.org/index.php/site/newsevents/news/bef_awards_10000_scholarships_to_two_student-athletes/#When:08:00:57Z   The Boomer Esiason Foundation has awarded $10,000 scholarships to two college freshmen with cystic fibrosis. In addition to demonstrating academic success, community involvement, financial need and compliance with CF therapies, applicants for the Exercise for Life scholarship are required to keep a running log for 12 weeks. Selected finalists compete for the scholarship via time trials conducted in their home towns by a representative from the Boomer Esiason Foundation. The fastest male and female finalists are awarded scholarships. “Doctors and CF care centers have made it clear: When it comes to CF, exercise saves lives,” said Boomer Esiason. “While our ultimate goal is to find a cure for cystic fibrosis, we know that the 30,000 Americans living with the disease need support in the here and now,” Esiason said. “The Exercise for Life scholarship program is one way BEF is meeting the day-to-day needs of people living with CF.” Taylor Lively, 18, already has moved into his dorm at Harding University in Searcy, Ark. In his time trial, Lively ran 1.5 miles in seven minutes and 13.81 seconds. Lively is a native of Lake Dallas, Texas, where he earned a 3.1 GPA at Lake Dallas High School. He competed in cross country and track and was district champion in three events during his senior year. He also was involved in his church and community. Lively hopes one day to be a physical education teacher or track coach. Jamie Caminiti, 18, will attend Cornerstone University in Grand Rapids, Mich. In her time trial, Caminiti ran 1.5 miles in nine minutes and 31.72 seconds. Caminiti is a native of Lapeer, Mich., where she earned a 3.9543 GPA and was a member of the National Honor Society at Lapeer East High School. She competed in cross country and swimming and also participated in band, swimming and a variety of clubs. Caminiti has three siblings, including one with CF, and she said her mottos are “your past determines your future” and “discipline always pays off in the end.” Caminiti plans to major in exercise science and hopes to be a personal trainer. The Boomer Esiason Foundation is “very proud of Taylor Lively and Jamie Caminiti,” Esiason said. “Dealing with this disease is tough, but they’re living, breathing proof that people with CF can lead full and productive lives.”   The Boomer Esiason Foundation has awarded $10,000 scholarships to two college freshmen with cystic fibrosis. In addition to demonstrating academic success, community involvement, financial need and compliance with CF therapies, applicants for the Exercise for Life scholarship are required to keep a running log for 12 weeks. Selected finalists compete for the scholarship via time trials conducted in their home towns by a representative from the Boomer Esiason Foundation. The fastest male and female finalists are awarded scholarships. “Doctors and CF care centers have made it clear: When it comes to CF, exercise saves lives,” said Boomer Esiason. “While our ultimate goal is to find a cure for cystic fibrosis, we know that the 30,000 Americans living with the disease need support in the here and now,” Esiason said. “The Exercise for Life scholarship program is one way BEF is meeting the day-to-day needs of people living with CF.” Taylor Lively, 18, already has moved into his dorm at Harding University in Searcy, Ark. In his time trial, Lively ran 1.5 miles in seven minutes and 13.81 seconds. Lively is a native of Lake Dallas, Texas, where he earned a 3.1 GPA at Lake Dallas High School. He competed in cross country and track and was district champion in three events during his senior year. He also was involved in his church and community. Lively hopes one day to be a physical education teacher or track coach. Jamie Caminiti, 18, will attend Cornerstone University in Grand Rapids, Mich. In her time trial, Caminiti ran 1.5 miles in nine minutes and 31.72 seconds. Caminiti is a native of Lapeer, Mich., where she earned a 3.9543 GPA and was a member of the National Honor Society at Lapeer East High School. She competed in cross country and swimming and also participated in band, swimming and a variety of clubs. Caminiti has three siblings, including one with CF, and she said her mottos are “your past determines your future” and “discipline always pays off in the end.” Caminiti plans to major in exercise science and hopes to be a personal trainer. The Boomer Esiason Foundation is “very proud of Taylor Lively and Jamie Caminiti,” Esiason said. “Dealing with this disease is tough, but they’re living, breathing proof that people with CF can lead full and productive lives.” 2010-08-19T08:00:57+00:00 http://esiason.org/index.php/site/newsevents/news/out_of_grief_sprouts_a_life-saving_legacy/ http://esiason.org/index.php/site/newsevents/news/out_of_grief_sprouts_a_life-saving_legacy/#When:17:35:59Z You don’t have to be rich, famous or even an adult to leave a memorable legacy that can change lives. Just ask Stacey Oglesby of Lockwood, Mo., whose 15-year-old daughter, Colbey, died in a car accident in 2001. Colbey had told her mother that when she got her driver’s license, she was going to sign up to be an organ donor. So when hospital personnel asked about organ donation, Ms. Oglesby said, ‘‘we had no hesitancy.’‘ Seven people got Colbey’s organs. Her lungs went to Valerie Vandervort, a 29-year-old Oklahoma woman with cystic fibrosis. In the nine years since, Ms. Vandervort has run three 5K races, hiked a mountain, danced at her sister’s wedding, doted on her nieces and nephews, and won medals in swimming at the 2010 National Kidney Foundation United States Transplant Games. Ms. Oglesby also befriended the recipient of Colbey’s heart, Judy Kaufman of Chesterfield, Mo., who was near death with congestive heart failure. When they met, Ms. Oglesby took a stethoscope to listen to the beat of her daughter’s heart. Ms. Oglesby, who speaks often about Colbey’s legacy, said she has inspired others to become potential organ donors. If not for donating her daughter’s organs and connecting to the recipients, she said, ‘‘it would have been hard to get through the grief.’‘ A Widespread Need At any given time in the United States, more than 100,000 people are waiting for donor organs, more than 10 times as many as become available. Some die waiting; others get sicker and sicker, sometimes too ill to survive when a suitable organ finally becomes available. In addition to kidneys, heart, lungs, liver, pancreas and intestines, donations can include tissues like corneas, skin, heart valves, bone, veins, cartilage, middle ear, tendons and ligaments that can be stored in tissue banks and used when needed. Most donations come from people who die suddenly, usually from an accident, a gunshot or a brief illness that resulted in brain death. (A small but growing number of donations follow cardiac death.) Some adults indicate their wish to be donors by signing the back of their driver’s license or a donor card or simply telling their next of kin. For minors, hospital personnel often ask the distraught parents if they would consider donating their child’s organs. But when 6-year-old Katie Coolican died in 1983 from an undiagnosed heart malformation, it was her mother, Maggie, a nurse, who asked about donating the child’s organs—‘‘to make some sense of it all,’’ Ms. Coolican, of East Hampton, Conn., said in an interview. ‘‘We were willing to donate anything,’’ she added, ‘‘but at the time all they could use were Katie’s corneas and kidneys.’‘ Likewise for Julie Schlueter of Winsted, Minn., whose daughter, Missy, 10, died of a cerebral hemorrhage in 1992: donating the girl’s organs meant her loss was not in vain. Missy’s liver and one kidney went to a man who four years later won a silver medal in the Summer Olympics in Atlanta; he sent the medal to the Schlueters to thank them for enabling him to live. Two toddlers, one from Italy and the other from Colorado, got Missy’s heart valves. And an Iowa woman, then 47, got her other kidney and is still doing well 18 years later. Rose D’Acquisto of St. Paul said that donating all her husband’s usable organs ‘‘has led to things I’d never imagined.’‘ Her husband, Tony, died in 1996 at age 35 when an undiagnosed brain tumor hemorrhaged and left him in an irreversible coma. Ms. D’Acquisto said the recipient of his liver—an Indiana man near death with a rare liver disease—had now been married more than 30 years and has three grown children. And the Minnesota farmer who got one of Tony’s kidneys got his life back; he had spent three years traveling three hours a day three times a week for dialysis. Ms. D’Acquisto, now remarried, says she continues to write and speak about organ donation as love’s greatest gift. Along with Ms. Schlueter, she was among more than 7,000 people who attended the Transplant Games last month in Madison, Wis. When Katie Coolican died, there was no follow-up care for families who donate the organs of their loved ones. After a few years of struggling with grief, her mother wrote about her experience in The American Journal of Nursing and began speaking about organ donation all over the country. She went back to school, got a master’s degree and wrote a booklet, ‘‘For Those Who Give and Grieve,’’ that was published by the National Kidney Foundation. (The foundation also publishes a quarterly newsletter with that title, edited by Ms. D’Acquisto.) ‘‘Katie’s had a wonderful legacy that continues to this day,’’ Ms. Coolican said. In 1992 she founded the National Donor Family Council for the kidney foundation to help grieving families that donate loved ones’ organs and tissues. The two-year follow-up program she created for families has become a model for organ donation programs throughout the country. Who Is Eligible to Give? Do not rule yourself out as a potential donor because you think you may be too ill or too old. Only a few circumstances, like pervasive infection or active cancer, absolutely preclude organ donation, and there is no age limit. People in their 80s and 90s have been successful donors of certain tissues, as have newborns. But for anyone under 18, a parent or guardian must approve the donation. Even if a person dies after an illness that precludes organ donation, or if too much time elapsed after death for organs to be viable, there is still the opportunity of whole-body donation to a medical college, where the body can be used in research or to help students learn anatomy. While it is best to register one’s interest in whole-body donation with a medical school in advance of death, after death it is up to the next of kin to make it happen. You no longer own your body after you die. If this is something you would want for yourself, discuss it with your spouse and children, who must agree with your wishes. Most religions support organ donation as a charitable act, although some may not condone whole-body donation. Check the Web site www.organdonor.gov and click on ‘‘Religious Views on Donation’’ for guidance. You don’t have to be rich, famous or even an adult to leave a memorable legacy that can change lives. Just ask Stacey Oglesby of Lockwood, Mo., whose 15-year-old daughter, Colbey, died in a car accident in 2001. Colbey had told her mother that when she got her driver’s license, she was going to sign up to be an organ donor. So when hospital personnel asked about organ donation, Ms. Oglesby said, ‘‘we had no hesitancy.’‘ Seven people got Colbey’s organs. Her lungs went to Valerie Vandervort, a 29-year-old Oklahoma woman with cystic fibrosis. In the nine years since, Ms. Vandervort has run three 5K races, hiked a mountain, danced at her sister’s wedding, doted on her nieces and nephews, and won medals in swimming at the 2010 National Kidney Foundation United States Transplant Games. Ms. Oglesby also befriended the recipient of Colbey’s heart, Judy Kaufman of Chesterfield, Mo., who was near death with congestive heart failure. When they met, Ms. Oglesby took a stethoscope to listen to the beat of her daughter’s heart. Ms. Oglesby, who speaks often about Colbey’s legacy, said she has inspired others to become potential organ donors. If not for donating her daughter’s organs and connecting to the recipients, she said, ‘‘it would have been hard to get through the grief.’‘ A Widespread Need At any given time in the United States, more than 100,000 people are waiting for donor organs, more than 10 times as many as become available. Some die waiting; others get sicker and sicker, sometimes too ill to survive when a suitable organ finally becomes available. In addition to kidneys, heart, lungs, liver, pancreas and intestines, donations can include tissues like corneas, skin, heart valves, bone, veins, cartilage, middle ear, tendons and ligaments that can be stored in tissue banks and used when needed. Most donations come from people who die suddenly, usually from an accident, a gunshot or a brief illness that resulted in brain death. (A small but growing number of donations follow cardiac death.) Some adults indicate their wish to be donors by signing the back of their driver’s license or a donor card or simply telling their next of kin. For minors, hospital personnel often ask the distraught parents if they would consider donating their child’s organs. But when 6-year-old Katie Coolican died in 1983 from an undiagnosed heart malformation, it was her mother, Maggie, a nurse, who asked about donating the child’s organs—‘‘to make some sense of it all,’’ Ms. Coolican, of East Hampton, Conn., said in an interview. ‘‘We were willing to donate anything,’’ she added, ‘‘but at the time all they could use were Katie’s corneas and kidneys.’‘ Likewise for Julie Schlueter of Winsted, Minn., whose daughter, Missy, 10, died of a cerebral hemorrhage in 1992: donating the girl’s organs meant her loss was not in vain. Missy’s liver and one kidney went to a man who four years later won a silver medal in the Summer Olympics in Atlanta; he sent the medal to the Schlueters to thank them for enabling him to live. Two toddlers, one from Italy and the other from Colorado, got Missy’s heart valves. And an Iowa woman, then 47, got her other kidney and is still doing well 18 years later. Rose D’Acquisto of St. Paul said that donating all her husband’s usable organs ‘‘has led to things I’d never imagined.’‘ Her husband, Tony, died in 1996 at age 35 when an undiagnosed brain tumor hemorrhaged and left him in an irreversible coma. Ms. D’Acquisto said the recipient of his liver—an Indiana man near death with a rare liver disease—had now been married more than 30 years and has three grown children. And the Minnesota farmer who got one of Tony’s kidneys got his life back; he had spent three years traveling three hours a day three times a week for dialysis. Ms. D’Acquisto, now remarried, says she continues to write and speak about organ donation as love’s greatest gift. Along with Ms. Schlueter, she was among more than 7,000 people who attended the Transplant Games last month in Madison, Wis. When Katie Coolican died, there was no follow-up care for families who donate the organs of their loved ones. After a few years of struggling with grief, her mother wrote about her experience in The American Journal of Nursing and began speaking about organ donation all over the country. She went back to school, got a master’s degree and wrote a booklet, ‘‘For Those Who Give and Grieve,’’ that was published by the National Kidney Foundation. (The foundation also publishes a quarterly newsletter with that title, edited by Ms. D’Acquisto.) ‘‘Katie’s had a wonderful legacy that continues to this day,’’ Ms. Coolican said. In 1992 she founded the National Donor Family Council for the kidney foundation to help grieving families that donate loved ones’ organs and tissues. The two-year follow-up program she created for families has become a model for organ donation programs throughout the country. Who Is Eligible to Give? Do not rule yourself out as a potential donor because you think you may be too ill or too old. Only a few circumstances, like pervasive infection or active cancer, absolutely preclude organ donation, and there is no age limit. People in their 80s and 90s have been successful donors of certain tissues, as have newborns. But for anyone under 18, a parent or guardian must approve the donation. Even if a person dies after an illness that precludes organ donation, or if too much time elapsed after death for organs to be viable, there is still the opportunity of whole-body donation to a medical college, where the body can be used in research or to help students learn anatomy. While it is best to register one’s interest in whole-body donation with a medical school in advance of death, after death it is up to the next of kin to make it happen. You no longer own your body after you die. If this is something you would want for yourself, discuss it with your spouse and children, who must agree with your wishes. Most religions support organ donation as a charitable act, although some may not condone whole-body donation. Check the Web site www.organdonor.gov and click on ‘‘Religious Views on Donation’’ for guidance. 2010-08-17T17:35:59+00:00 http://esiason.org/index.php/site/newsevents/news/cf_profile_tiffany_christensen_sick_girl_speaks/ http://esiason.org/index.php/site/newsevents/news/cf_profile_tiffany_christensen_sick_girl_speaks/#When:16:29:59Z Tiffany Christensen No stranger to health challenges, Tiffany Christensen has dedicated herself to those touched with illness. Tiffany’s second book, We Are the Change: Transforming the Healthcare Experience Through Partnership, was published this year. Tiffany’s Story. “At six months of age, I was diagnosed with cystic fibrosis. At 12, I had my first in-hospital stay and began physically and emotionally grappling with the difficulty of this disease. In 1996, at age 21, I was too sick to keep up with my college classmates. I had to give up my acting dreams and drop out of school. In 2000, my life was spared by the gift of a double-lung transplant. In 2002, I received the devastating news that my lungs were being rejected, and I became very sick very quickly. With no second transplant in sight, I found my inner world opening as my outer body weakened. Instead of defining myself by my actions, I was able to go deeper and find my true essence. This new understanding of myself and others allowed me to embrace the idea that I was valuable, in a hospital gown or in an evening gown! I was able to get a second transplant in 2004. When I woke up in ICU, I knew I wanted to dedicate my life to those touched by illness.” Tiffany’s Mission. “Today, I am in my mid-30s and am enjoying the best time of my life. In 2007, my first book, Sick Girl Speaks!, was published and became popular with patients, families and healthcare professionals. I also enjoy the role of Illness and Transition Coach, helping other patients navigate the healthcare maze. Since 2005, I have participated in many exciting speaking events. While my career gives me great satisfaction, my greatest joy has come from meeting the man of my dreams, adopting one crazy Whippet and enjoying life with my wonderful friends and family. I know that life is precious and precarious. It is my hope to live each day with integrity and purpose; leaving no room for regrets.” A Fun Fact About Tiffany. She would love to vacation in Denmark. Because of BEF ... “Because of BEF, people who may not have ever heard of the disease cystic fibrosis are now involved and passionate about funding new research, raising awareness and making CF a disease of the past. In addition, patients and families who live with CF have support through education and college scholarships. As a CF patient, I am happy to know Boomer has taken his family’s lemon and made enough lemonade for all of us. Thank you, BEF!” Do you have a story to tell?  Go to www.ClubCysticFibrosis.com and share it with the CF community. Tiffany Christensen No stranger to health challenges, Tiffany Christensen has dedicated herself to those touched with illness. Tiffany’s second book, We Are the Change: Transforming the Healthcare Experience Through Partnership, was published this year. Tiffany’s Story. “At six months of age, I was diagnosed with cystic fibrosis. At 12, I had my first in-hospital stay and began physically and emotionally grappling with the difficulty of this disease. In 1996, at age 21, I was too sick to keep up with my college classmates. I had to give up my acting dreams and drop out of school. In 2000, my life was spared by the gift of a double-lung transplant. In 2002, I received the devastating news that my lungs were being rejected, and I became very sick very quickly. With no second transplant in sight, I found my inner world opening as my outer body weakened. Instead of defining myself by my actions, I was able to go deeper and find my true essence. This new understanding of myself and others allowed me to embrace the idea that I was valuable, in a hospital gown or in an evening gown! I was able to get a second transplant in 2004. When I woke up in ICU, I knew I wanted to dedicate my life to those touched by illness.” Tiffany’s Mission. “Today, I am in my mid-30s and am enjoying the best time of my life. In 2007, my first book, Sick Girl Speaks!, was published and became popular with patients, families and healthcare professionals. I also enjoy the role of Illness and Transition Coach, helping other patients navigate the healthcare maze. Since 2005, I have participated in many exciting speaking events. While my career gives me great satisfaction, my greatest joy has come from meeting the man of my dreams, adopting one crazy Whippet and enjoying life with my wonderful friends and family. I know that life is precious and precarious. It is my hope to live each day with integrity and purpose; leaving no room for regrets.” A Fun Fact About Tiffany. She would love to vacation in Denmark. Because of BEF ... “Because of BEF, people who may not have ever heard of the disease cystic fibrosis are now involved and passionate about funding new research, raising awareness and making CF a disease of the past. In addition, patients and families who live with CF have support through education and college scholarships. As a CF patient, I am happy to know Boomer has taken his family’s lemon and made enough lemonade for all of us. Thank you, BEF!” Do you have a story to tell?  Go to www.ClubCysticFibrosis.com and share it with the CF community. 2010-08-16T16:29:59+00:00 http://esiason.org/index.php/site/newsevents/news/new_cf_wind_sprint_using_a_percussor_for_airway_clearance/ http://esiason.org/index.php/site/newsevents/news/new_cf_wind_sprint_using_a_percussor_for_airway_clearance/#When:18:32:40Z The Boomer Esiason Foundation has posted Episode 6 of the CF Wind Sprint series. This short-format video demonstrates the use of a percussor to promote airway clearance. BEF launched CF Wind Sprints in May 2010. The series of brief videos, hosted by Jerry Cahill, BEF’s Volunteer Director for Education & Team Boomer, address a variety of topics, including traveling, nutrition, exercise and treatments. BEF invites the CF community to submit questions and topics for CF Wind Sprints via its Facebook fan page or on Twitter. Previous CF Wind Sprints include: Episode 1: Introduction to CF Wind Sprints Episode 2: Sterilizing Nebulizers Episode 3: Exercising at Home and in the Hospital Episode 4: Sinus Irrigation Episode 5: A Recipe for Maintaining Your Weight The Boomer Esiason Foundation has posted Episode 6 of the CF Wind Sprint series. This short-format video demonstrates the use of a percussor to promote airway clearance. BEF launched CF Wind Sprints in May 2010. The series of brief videos, hosted by Jerry Cahill, BEF’s Volunteer Director for Education & Team Boomer, address a variety of topics, including traveling, nutrition, exercise and treatments. BEF invites the CF community to submit questions and topics for CF Wind Sprints via its Facebook fan page or on Twitter. Previous CF Wind Sprints include: Episode 1: Introduction to CF Wind Sprints Episode 2: Sterilizing Nebulizers Episode 3: Exercising at Home and in the Hospital Episode 4: Sinus Irrigation Episode 5: A Recipe for Maintaining Your Weight 2010-08-09T18:32:40+00:00