Rose Bowl Competitors Fight for Same Outcome – A Cure

first_imgSports Rose Bowl Competitors Fight for Same Outcome – A Cure From STAFF REPORTS Published on Thursday, December 18, 2014 | 2:06 pm Home of the Week: Unique Pasadena Home Located on Madeline Drive, Pasadena Top of the News Community News Subscribe EVENTS & ENTERTAINMENT | FOOD & DRINK | THE ARTS | REAL ESTATE | HOME & GARDEN | WELLNESS | SOCIAL SCENE | GETAWAYS | PARENTS & KIDS Your email address will not be published. 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Free.Get all the latest Pasadena news, more than 10 fresh stories daily, 7 days a week at 7 a.m. Pasadena’s ‘626 Day’ Aims to Celebrate City, Boost Local Economy Community News First Heatwave Expected Next Week Business News Pasadena Will Allow Vaccinated People to Go Without Masks in Most Settings Starting on Tuesday faithfernandez More » ShareTweetShare on Google+Pin on PinterestSend with WhatsApp,Virtual Schools PasadenaHomes Solve Community/Gov/Pub SafetyCitizen Service CenterPASADENA EVENTS & ACTIVITIES CALENDARClick here for Movie Showtimes Reigning national college football champions, Florida State University (FSU) Seminoles will take on No. 2 Oregon (UO) Ducks in the Rose Bowl, Jan. 1, but the teams have a shared goal that trumps their quest for the 2015 College Football National Title – a cure against Fanconi anemia (FA), a rare and incurable blood disorder plaguing two high-profile families within these major college programs.FSU Head Football Coach, Jimbo Fisher and wife, Candi, have a 9-year-old son, Ethan, who was diagnosed with FA less than four years ago. Former UO President Dave Frohnmayer and wife, Lynn, have a 27-year-old daughter, Amy, with FA and have lost two other children to this deadly disease.This high-stakes football play-off game has brought these families of opposing teams, and coasts, together for the first time to fight the battle off the field. The Frohnmayers founded The Fanconi Anemia Research Fund (FARF) in 1989 to fund grants for critical FA efforts and to support affected families, and the Fishers created Kidz1stFund immediately following their son’s diagnosis to fight this disease through research.These are the only two FA research organizations in the country.“It’s a terrible fate our families share, but one we use to fuel our fight against FA,” said Coach Fisher. “With the nation’s attention on the Rose Bowl, we have both an opportunity and responsibility to raise awareness for a much more critical victory in our sights.”Over the past 25 years, FARF has raised more than $29 million to support families and fund over 100 doctors and researchers worldwide, all racing to find a cure. Since its inception, Kidz1stFund has donated $2.8 million directly to the University of Minnesota Masonic Children’s Hospital, the largest treatment center for FA patients in the country.“Because of these aggressive efforts, we’re beginning to find ways to combat this disease that was once a total mystery and an immediate death sentence for children,” said Dave Frohnmayer.Ethan and Amy are two of fewer than 1,000 people in the U.S. with FA. Nearly 100 percent of patients need high-risk bone marrow transplants before adulthood, and even then, survivors have an estimated median life span of only 33 years old.FSU President John Thrasher and interim UO President Scott Coltrane have spoken directly about this significant connection between the schools. “The Fisher and Frohnmayer families have all our support for their dedicated research efforts,” said Thrasher.Fanconi Anemia Research Fund, Inc. (FARF)Lynn and Dave Frohnmayer started the Fanconi Anemia Research Fund, Inc. in 1989, to fund research into this disease and to provide support to affected families worldwide by medical referral, education, publications, and annual family meetings. To date, the Fund has raised more than $29 million. Fifty-six universities and institutions have received support from the Fund for almost 200 research projects to study FA. The Fund convenes an annual Fanconi Anemia Scientific Symposium at which researchers from around the world present the results of their research. To make a contribution or learn more, please visit www.fanconi.org or contact Laura Hays, PhD, at [email protected] or (541) 687-4658. Media materials may be obtained at www.fanconi.org/press.Kidz1stFundKidz1stFund was established in 2011 by FSU head football coach Jimbo Fisher and his wife, Candi, to raise awareness and funds in support of research to fight Fanconi anemia, a rare but serious blood disease that affects thousands of children each year, including their younger son, Ethan. To date, Kidz1stFund has given over $2.8 million to fund groundbreaking research at the University of Minnesota Masonic Children’s Hospital. To make a contribution or learn more about the fight, visit www.Kidz1stFund.com. Additional media materials including fact sheets, interviews, b-roll and other visual assets may be obtained on www.Kidz1stFund.com/press. 14 recommended0 commentsShareShareTweetSharePin it last_img read more

Urgent appeal for family hit by motor neurone disease

first_imgLinkedin NewsCommunityUrgent appeal for family hit by motor neurone diseaseBy Bernie English – February 24, 2020 2738 Previous articleCrack cocaine supermarkets causing chaosNext articleWeekend Siamsa le jazz piano quartet Bernie Englishhttp://www.limerickpost.ieBernie English has been working as a journalist in national and local media for more than thirty years. She worked as a staff journalist with the Irish Press and Evening Press before moving to Clare. She has worked as a freelance for all of the national newspaper titles and a staff journalist in Limerick, helping to launch the Limerick edition of The Evening Echo. Bernie was involved in the launch of The Clare People where she was responsible for business and industry news. Twitter Facebook WhatsAppcenter_img Jer and Jackie with their children Noah and FayeA YOUNG Limerick family who has been struck by the tragedy of motor neurone disease are set to benefit from an online appeal to restore a 300-year-old house.Jer Spillane (39) was diagnosed with the incurable disease last November and already he has lost the use of his hands and arms.Sign up for the weekly Limerick Post newsletter Sign Up Married to Jackie, they have two children, Noah (7) and Faye (4) and with carpenter Jer now out of work and Jackie facing the prospect of giving up her SNA job in a school to be his carer, the family is facing financial ruin.Jackie is originally from Kilbehenny in County Limerick and the couple are trying to restore an old family farmhouse there in preparation for Jer’s inevitable deteriorationClose family friend, Jennifer O’Sullivan told the Limerick Post why she and others have started a ‘Go Fund Me’ campaign.“The family has been renting a house for the last ten years but there is no downstairs bathroom and the doors are not wide enough for a wheelchair, which Jer is going to need sooner or later.“There is no question but he will be in a chair but we’re hoping that it will not be before they can do up the Kilbehenny house to cater for his needs.“There’s no heating system in the house. It’s 300 years old and it’s not suitable for a wheelchair but it is a place they can call home.“The cost of doing it up to a standard that is suitable for someone in a wheelchair has been estimated at €150,000. They don’t have money and they can’t get any kind of loan or mortgage because Jer now has no income and Jackie will have to give up her job in time,” Jennifer explained.Nor can the family avail of any of the disability grants for renovations as they would have to have owned the house for a year.The family has already endured huge bereavements, losing three of their parents and Jer’s only sister who died in a drowning tragedy.“They are such a lovely close family who have suffered so much already. This is heartbreaking. They’re devoted to each other and their children,” said Jennifer.“This disease shouldn’t happen to anyone and certainly not to such lovely people”.In the first three days of the campaign, almost €18,000 was raised from generous donors.“We’ve been blown away by the response and we’re so moved by people’s generosity. But every euro counts and we have a long way to go. This is a heartfelt plea to give them a home where Jer can make the best of his life with his family.”See https://www.gofundme.com/f/jer-spillane-fund Email Print Advertisementlast_img read more