The Cystic Fibrosis Foundation
The Cystic Fibrosis Foundation
News Article | May 5, 2017
This year's walk also featured a new location and took place at Reid Park that accommodated 32 vendors, food trucks, kid's zones and the MCLife Instagram Kiosk. Without all the incredible sponsors both local and national, dedicated volunteers and fearless walkers, this powerful event would not have been possible. MeMe Aguila, the Development Director for the Cystic Fibrosis Foundation of Southern Arizona has a few words about this year's walk: "We have had such positive responses this year from our team captains and their walkers about holding it at Reid Park. Everyone loved the more festive environment that the walk committee was able to create. People stayed around and really enjoyed themselves. The addition of the food vendors was also a real plus." MC Companies is committed to supporting local and national charities throughout the American Southwest. With properties throughout Texas, Arizona and Oklahoma, MC Companies team members are encouraged to participate in philanthropic giving. The Sharing the Good Life Foundation was established by MC Companies About MC Companies: MC Companies http://mccompanies.com is a real estate investment, development, construction, and management company specializing in the multifamily properties and commercial markets. MC Companies has completed over $500 million in multi-family and commercial value-added transactions since 1985. About The Sharing the Good Life Foundation: MC Companies' Sharing the Good Life Foundation is a program designed to build strong and vibrant communities, improve quality of life, and make a positive difference where we live, work, learn and play. By working together, we can share the good life and build a better world. https://www.mccompanies.com/about/sharing-the-good-life/ About The Cystic Fibrosis Foundation of Southern Arizona: The CF Foundation is the world's leader in the search for a cure for cystic fibrosis, and nearly every CF-specific drug available today was made possible with our financial support. We are a donor-funded, 501(c)(3) nonprofit that is fully accredited by the Better Business Bureau's (BBB) Wise Giving Alliance program. https://www.cff.org/SouthernAZ/ To view the original version on PR Newswire, visit:http://www.prnewswire.com/news-releases/we-walk-together-so-others-can-breathe-mc-companies-sponsors-another-successful-great-strides-walk-in-tucson-300452508.html
News Article | May 4, 2017
WASHINGTON--(BUSINESS WIRE)--Today, the United States House of Representatives passed the American Health Care Act (AHCA), which would impact the health care coverage of millions of Americans, including people living with cystic fibrosis (CF). “ The American Health Care Act, as passed by the House today, is woefully inadequate for people with cystic fibrosis,” said Preston W. Campbell, M.D., president and CEO of the Cystic Fibrosis Foundation. “ The people who would be most severely impacted by this legislation seem to have been forgotten in the health care debate and we implore the Senate to do better for people living with chronic and life threatening-diseases, including people with cystic fibrosis.” The legislation passed by the House would: “ The CF community has come so far in their fight against this deadly disease, and it’s absolutely critical that this progress is not jeopardized by eliminating protections for people living with chronic diseases or by making adequate health coverage unaffordable for people who need specialized care to live longer and healthier lives. “ While, the Cystic Fibrosis Foundation is deeply disappointed in the actions of the House of Representatives, we recognize the effort to protect coverage for people living with CF is far from over. We will continue our dialogue with Congress to find solutions that provide all Americans with high-quality, affordable care regardless of an individual’s income, employment status, health status, or geographic location,” said Campbell. From the very beginning of the process, the Cystic Fibrosis Foundation has been outspoken about its opposition to this bill because of the impact it would have on our community’s ability to access high-quality, specialized care. Along with the CF community, the Foundation will continue to advocate for adequate, affordable insurance. The Cystic Fibrosis Foundation is the world's leader in the search for a cure for cystic fibrosis. The Foundation funds more cystic fibrosis research than any other organization, and nearly every CF drug available today was made possible because of Foundation support. Based in Bethesda, Md., the Foundation also supports and accredits a national care center network that has been recognized by the National Institutes of Health as a model of care for a chronic disease. The Cystic Fibrosis Foundation is a donor-supported nonprofit organization. For more information, go to www.cff.org.
News Article | November 5, 2016
November 3, 2016 (PRWEB) November 05, 2016 -- Crowdster, a leading provider of online fundraising solutions including the most advanced third party peer-to- peer fundraising platform, FriendRaiser TM, today announced one of its newest clients – Texas based First3Years. First3Years is a recognized leader in education and advocacy for infant and toddler development, and is the only organization in Texas working across sectors to improve the quality of care for infants and toddlers. First3Years believes that supporting the social emotional development of infants and toddlers is critical to building a better, stronger future for all of Texas. “Babies can’t wait,” says Sadie Funk, First3Years Executive Director. “The future of our community, our economy, and the future of how we see ourselves, interlinked with one another—all of this is at stake. And all of it, 20 years from now, is dependent on how we treat young children and their families today.” “We are pleased to be working with First3Years on implementing a FriendRaiser TM solution to drive awareness of their programs across Texas and beyond,” said Robin Lederer, Crowdster VP. First3Years is reaching out for support using FriendRaiser TM to continue educating, advocating, and collaborating to ensure that every Texas infant and toddler gets a strong start in life. Three teams will lead the campaign - Members, Volunteers and Students - with webpages to reach family, friends and colleagues through the platform social media capabilities, (CLICK HERE). Contact Soudary Kittivong-Greenbaum to join the campaign and create your own team or personal webpage. Crowdster’s other clients include The Cystic Fibrosis Foundation, The Bone Marrow Foundation, The Navigators, Action Against Hunger, and many others. For more information, contact Crowdster CEO Joseph Ferraro at (516) 501-9366. Founded in 2007, Crowdster (formerly Karma411) is focused on supporting non-profit and for-profit social enterprise companies to help them achieve their mission. We do so by offering a powerful online fundraising platform combined with advanced fundraising marketing services including creative services, event planning & execution, email marketing and other digital marketing services. Eighty (80%) of brain development occurs between ages 0-3, and lifelong learning capacity and emotional resilience are shaped during these formative years. First3Years educates, advocates, and collaborates to advance the healthy development of infants and toddlers—focusing on building long-term, sustainable solutions to advance the health and development of young children and their families.
News Article | November 1, 2016
Jared R. Kessler, an associate in the Litigation Practice of international law firm Greenberg Traurig, has been selected by the Cystic Fibrosis Foundation as one of the “40 Under 40 Outstanding Lawyers of South Florida.” He will be recognized along with other honorees on Saturday, Nov. 5 at a fundraiser gala event at the Florida International University Kovens Conference Center, 3000 NE 151 Street, North Miami, FL 33131. The award will be presented by the South Florida office of the nonprofit organization’s Florida chapter. The Cystic Fibrosis Foundation recognizes distinguished attorneys committed to both the practice of law and the betterment of their community. The Cystic Fibrosis Foundation is the world's leader in the search for a cure for cystic fibrosis, and nearly every Cystic Fibrosis-specific drug available today was made possible with the foundation’s financial support. “I’m excited to receive this recognition from The Cystic Fibrosis Foundation and to share this honor with so many distinguished attorneys in South Florida,” Kessler said. “At Greenberg Traurig we are committed to serving our community and supporting many worthwhile causes through our service and leadership. We applaud Cystic Fibrosis Foundation for its efforts to help find a cure for this disease.” At Greenberg Traurig, Jared R. Kessler focuses his practice on complex commercial litigation, including class action litigation and securities litigation. In addition to his support of The Cystic Fibrosis Foundation, he currently serves as the Chair-Elect of Make-A-Wish Champions, a group of young professionals supporting the Make-A-Wish Foundation’s Southern Florida Chapter. The Greenberg Traurig Miami office was founded in 1967 by attorneys with a business-focused approach and a tradition of community service. Since that time, the Miami office has actively supported and helped drive South Florida’s growth as an international financial and cultural center, serving as a gateway between the United States, Latin America, Europe, Asia, and the Middle East. In the community, the office is well-known for its “Miami Roots, Global Reach.” The attorneys advise local, national, and international companies in numerous industries and sectors, including aviation, entertainment, financial institutions, health care, international trade and customs, labor and employment, manufacturing, real estate, retail, and technology. In Florida, Greenberg Traurig serves clients from across seven offices in Boca Raton, Fort Lauderdale, Miami, Orlando, Tallahassee, Tampa, and West Palm Beach. Greenberg Traurig, LLP is an international, multi-practice law firm with approximately 2,000 attorneys serving clients from 38 offices in the United States, Latin America, Europe, Asia, and the Middle East. The firm is No. 1 on the 2015 Law360 Most Charitable Firms list, third largest in the U.S. on the 2015 Law360 400, on the 2015 Am Law Global 100, and among the 2015 BTI Brand Elite. More information at: http://www.gtlaw.com.
News Article | October 28, 2016
4th Source is proud to sponsor the 25th annual Express Scripts Reach for a Star Gala benefitting the Cystic Fibrosis Foundation (CFF). The event will take place at the Ritz-Carlton in Clayton, Missouri on Friday, October 21. The gala is the CFF Gateway Chapter’s most anticipated event of the year, celebrating the heroes in the community who are working to provide a hopeful future for those living with Cystic Fibrosis (CF). “We’re excited to join Express Scripts in sponsoring such an impactful event. The Gateway Chapter of the Cystic Fibrosis Foundation does a wonderful job in helping people with CF live longer, more fulfilling lives.” ~ Rick McKay, 4th Source Co-Founder & President The Reach for a Star Gala is a black tie affair and will include a cocktail reception, gourmet dinner, live and silent auctions, and live entertainment. The Gateway Chapter, based out of St. Louis, MO, is one of 70 CF Foundation chapters across the country. Their work has contributed to major advancements in CF treatment. Once considered exclusively a childhood disease, approximately half of all people living with CF today are over the age of 18. 4th Source encourages everyone to join the CF Foundation in helping people add tomorrows by donating here. About the Cystic Fibrosis Foundation The Cystic Fibrosis Foundation is the world's leader in the search for a cure for cystic fibrosis, a life-threatening genetic disease that affects the lungs and pancreas. Nearly every CF drug available today was made possible because of CF Foundation support. Based in Bethesda, MD., the CF Foundation also supports and accredits a national care center network that has been recognized by the National Institutes of Health as a model of care for a chronic disease. The Cystic Fibrosis Foundation is a donor-supported nonprofit organization. Join the cause to help people with CF by donating here. About 4th Source 4th Source provides powerful, cost-effective IT services as an alternative to offshore outsourcing. Headquartered in Tampa, FL, 4th Source employs over 500 people in the US and Mexico who help performance-driven businesses with IT, business process services, data services, and application development. The hybrid nearshore-onshore model offers convenient proximity, efficiency gains, and significant cost savings. 4th Source has been recognized by Inc. magazine as one of the 5000 fastest growing companies in America six times. To find out more, visit http://www.4thsource.com.
Moinpour C.M.,Fred Hutchinson Cancer Research Center |
Donaldson G.W.,University of Utah |
Davis K.M.,Georgetown University |
Potosky A.L.,Georgetown University |
And 13 more authors.
Quality of Life Research | Year: 2016
Purpose: To evaluate how well three different patient-reported outcomes (PROs) measure individual change. Methods: Two hundred and fourteen patients (from two sites) initiating first or new chemotherapy for any stage of breast or gastrointestinal cancer participated. The 13-item FACIT Fatigue scale, a 7-item PROMIS® Fatigue Short Form (PROMIS 7a), and the PROMIS® Fatigue computer adaptive test (CAT) were administered monthly online for 6 months. Reliability of measured change was defined, under a population mixed effects model, as the ratio of estimated systematic variance in rate of change to the estimated total variance of measured individual differences in rate of change. Precision of individual measured change, the standard error of measurement of change, was given by the square root of the rate-of-change sampling variance. Linear and quadratic models were examined up to 3 and up to 6 months. Results: A linear model for measured change showed the following by 6 and 3 months, respectively: PROMIS CAT (0.363 and 0.342); PROMIS SF (0.408 and 0.533); FACIT (0.459 and 0.473). Quadratic models offered no noteworthy improvement over linear models. Both reliability and precision results demonstrate the need to improve the measurement of intra-individual change. Conclusions: These results illustrate the challenge of reliably measuring individual change in fatigue with a level of confidence required for intervention. Optimizing clinically useful measurement of intra-individual differences over time continues to pose a challenge for PROs. © 2016 Springer International Publishing Switzerland
PubMed | Levine Cancer Institute, Fred Hutchinson Cancer Research Center, Northwestern University, University of California at Los Angeles and 5 more.
Type: | Journal: Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation | Year: 2016
To evaluate how well three different patient-reported outcomes (PROs) measure individual change.Two hundred and fourteen patients (from two sites) initiating first or new chemotherapy for any stage of breast or gastrointestinal cancer participated. The 13-item FACIT Fatigue scale, a 7-item PROMISA linear model for measured change showed the following by 6 and 3months, respectively: PROMIS CAT (0.363 and 0.342); PROMIS SF (0.408 and 0.533); FACIT (0.459 and 0.473). Quadratic models offered no noteworthy improvement over linear models. Both reliability and precision results demonstrate the need to improve the measurement of intra-individual change.These results illustrate the challenge of reliably measuring individual change in fatigue with a level of confidence required for intervention. Optimizing clinically useful measurement of intra-individual differences over time continues to pose a challenge for PROs.
News Article | February 15, 2017
Ronald McDonald House and Cystic Fibrosis Foundation are recipients of annual charity drive WEST JORDAN, UT--(Marketwired - February 10, 2017) - Mountain America Credit Union is proud to announce the total amount raised in its 2016 annual charity drive benefiting Ronald McDonald House Charities and Cystic Fibrosis Foundation. Employees of Mountain America donated a total of $37,465 through candy sales, employee dress down days, lunch fundraisers, and more. Mountain America employees participated in the Great Strides walk, Cystic Fibrosis Foundation's largest fundraising event. The employees formed teams with their friends, family and colleagues, and rallied together with their community on walk-day for a fun celebration. The Cystic Fibrosis Foundation is the world's leader in the search for a cure for cystic fibrosis. Employees also teamed up to help prepare meals at Ronald McDonald House chapters in Utah, Idaho, Nevada, Arizona, and New Mexico. Ronald McDonald House provides a place for family members to stay while their children receive medical treatment. The house is not just a residence. From the magical wish room for children who can choose a toy and sit on a throne, to the reflective sanctuary room where parents can pray and meditate, Ronald McDonald House provides a refuge for families who are going through difficult situations. "We see the power of 'people helping people' when we can improve someone's life by helping them achieve their financial dreams. But sometimes those dreams can be too far away to even think about for families facing the reality of caring for a sick child or other family member," says Sterling Nielsen, chief executive officer for Mountain America. "Mountain America and our employees are grateful for the opportunity to support such great organizations who do so much for families who find themselves relying on their services." Mountain America and its employees hold internal company-wide charity fundraisers each year. Two charities are selected to receive the donations. Mountain America Credit Union has more than $6 billion in assets and serves more than 600,000 members, wherever they are, through online and mobile banking, 86 branches in five states and provides access to more than 50,000 surcharge-free ATMs and 5,000 shared-branching locations nationwide. With credit union roots dating back to the 1930s, Mountain America has become a tradition for many members, offering a variety of financial products and services for consumers and businesses, including savings accounts, auto loans, checking accounts, mortgage loans, business checking, student loans, SBA loans and retirement options. Visit www.macu.com for more information.
News Article | February 17, 2017
FireDisc® founders, Hunter and Griffin Jaggard, are no strangers to perseverance. Raised in Texas by two hard-working parents, they developed a strong work ethic, a passion to help solve problems and never give up. “I can’t” was a foreign notion in the fabric of the Jaggard family. In December of 2002, Griffin Jaggard was diagnosed with multiple sclerosis. In response, brother and best friend, Hunter Jaggard, rallied in support and “The Carney Men” Bike MS team was formed. 15+ races later, Jaggard is healthy as a horse, and $1M dollars has been raised to support the National Multiple Sclerosis Society. Team Carney Men, is the first non-corporate team to raise $1 Million for the South Central Chapter and just received the Circle of Distinction award from the National MS Society. Their goal is ride the BP MS 150 every year until there is a cure for Griff and the millions of others living with multiple sclerosis. "In December of 2002, a junior at Texas Tech University, I was diagnosed with multiple sclerosis,” recalls FireDisc® President and Co- founder, Griffin Jaggard.” “It was one of the toughest times in my life. I did not know what to think and at that time I did not have much knowledge about the disease and its effects. I was worried and scared. My friends and family shared the same emotions,” Jaggard added. Not long after the diagnosis, during a Red River Waylon Jennings Tribute concert, Griff’s brother and best friend, Hunter, shared the fact that a Bike MS team had been formed in his honor. “I was shocked, at a loss for words and so proud to have such a caring brother,” said Jaggard. “I’ll never forget, my brother Hunter told me that we were going to battle this disease head-on and do everything we could to find a cure.” The brother team formed a non-profit, and 15 rides later, “The Carney Men” have raised $1M via Bike MS to support the National Multiple Sclerosis Society. That wasn’t enough. They took their story on the road and inspired hundreds of others with their story and team strategy. Many people have heard about multiple sclerosis, but do not know much about the nature or effects of this unpredictable disease. Since the inception of the Carney Men, the Jaggard brothers have expanded their humanitarian efforts to include support for local volunteer firemen, Halter, Inc. Bridges to Life, The Center for Hearing and Speech, The National Breast Cancer Foundation, The Cystic Fibrosis Foundation, and the Lone Survivor Foundation and more. About FireDisc®: Texas-based FireDisc® specializes in the design and manufacturing of the world’s most innovative, high-quality and versatile portable outdoor cookers and accessories. The company was founded by two entrepreneurial brothers, Griffin and Hunter Jaggard, who, armed with a makeshift tractor plow disc set out on a mission to build a cooker worthy of everyone from the world’s top chef’s to hunters, backyard family grill masters, tailgaters and campers. FireDisc® Cooker products are currently sold nationally and online throughout the globe. Heavy-duty ultra-high carbon steel construction render the cookers indestructible, while meticulous designs yield convenient portability and ease-of-use. A rigorous “Chef-tested/Chef-Approved” quality assurance program enables the cookers to deliver unmatched cooking characteristics, as they have been vetted by some of the world’s leading chef’s. Prior to their launch of FireDisc® Cookers, the founders formed a non-profit to raise money and find a cure for Multiple Sclerosis. To date $1M has been raised via “The Carney Men” Bike MS team. For more information, visit http://www.firedisccookers.com. Media Contact Janine Robertson Cell: 206-354-9093 firediscjanine(at)gmail(dot)com http://www.firedisccookers.com Built to Haul, Cooks it All!