Running for Her Life
"Despite a rare, incurable disease, Amy Frohnmayer Winn ran joyfully through her limited time on earth, making the most of every mile—and every moment."
Click here to read the full article about Amy Winn in Runners World magazine, out 6/12/2017.
Lynn Frohnmayer: 'Devastating news' now life's mission
Click to read about FARF co-founder Lynn Frohnmayer's mission to continue fighting Fanconi anemia.
Welcome Mark Quinlan, New Executive Director of the FA Research Fund
A Note from the Board President
Dear FAmilies, scientific community, volunteers, friends and donors,
Please allow me to introduce our new Executive Director, Mark Quinlan. We are excited to bring Mark on board to lead the Fund into the future. Mark comes to FARF with years of nonprofit and Executive Director experience. Most currently, he served as Program Director at the University of Oregon School of Law. This is following six years as the Executive Director for Habitat for Humanity in Bend, Ore., and 11 years as a Program Manager for the High Desert Education Service District in Redmond, Ore. He earned a Bachelor of Science degree in Social and Behavioral Science and a Master in Public Administration. He participated in the Strategic Perspectives of Nonprofit Management executive learning program at Harvard Business School in 2012 and last year, he completed the Foundations of Collaborative Governance program at Portland State University. Most recently, he participated in the University of Oregon’s Financial Stewardship Institute course.
Please join me and the rest of the Board of Directors in welcoming Mark to the FA community. We all look forward to his contributions and insights as FARF continues to advance its mission.
Board of Directors, President
I am thrilled to join this dedicated group as the Fund’s Executive Director. I am humbled and honored by the opportunity to carry on the incredible work that you have all achieved over the last 28 years. What attracted me to the organization was its focused approach to identifying high-quality and meaningful research, and the way FARF puts donor funds to work where they have the greatest impact on families affected by Fanconi anemia. I look forward to building new partnerships, developing innovative programs, and fostering positive relationships within the FA community to advance the Fund’s mission.
I am excited about what the future holds for the FA community. Together, we are going to build on the incredible successes achieved over the years and expand our impact. We are going to empower researchers and doctors to continue to make game-changing breakthroughs. We are going to grow our support services to families affected by FA worldwide. As a united community, we will work to achieve our mission of finding better treatments and a cure for FA.
I look forward to meeting you at Family Camp, the Scientific Symposium, or one of the many great fundraisers for our cause! In the meantime, feel free to reach out to me any time at 541.687.4658 or firstname.lastname@example.org.
Thanks for your support and for all you do,
Knight Family Funds Five Fanconi Anemia Research Projects in First Year
Eugene, Ore.; March 22, 2017 – In December 2015, Phil and Penny Knight pledged a gift of $10 million over ten years to support the David B. Frohnmayer Scientific Research Fund, a dedicated fund under the umbrella of the Fanconi Anemia Research Fund (FARF). A major focus of this initiative is to prevent and cure the cancers that are now a primary cause of death in adults with Fanconi anemia (FA). The Knight gift is a cornerstone of FARF’s campaign to accelerate the pace of clinical trials, drug testing, gene therapies and more effective treatments for children and adults with FA. The goal is to reduce the time it takes to move research into practice.
“This is an exciting time for FA research,” said Dr. Brad Preston, FARF’s Scientific Director. “The Knight gift now allows us to support clinical studies to help children and adults with FA.”
In the last year, five projects have been funded through the Knight gift, including the first stage of a clinical trial to prevent or delay bone marrow failure and leukemia in FA.
The Phase I trial will be conducted under the direction of Dr. Akiko Shimamura at the Dana-Farber/Boston Children’s Cancer and Blood Disorders Center. This will be the first clinical trial that repurposes an established, safe drug – metformin, used for Diabetes – to treat FA. If successful, the impact on FA patients could be very high.
Dr. Eunike Velleuer of Heinrich-Heine University and Ralf Dietrich of the German FA Support Group are using non-invasive brush biopsies to diagnose early oral cancer. In 2016, they examined the mouths of 286 people with FA and found four with cancer and three with pre-cancerous lesions. None of these cancers was detected by the patients’ treating physicians. Thus, the diagnosis of cancer would have been delayed, perhaps fatally, if Dr. Velleuer and Dietrich had not conducted their examinations as part of this funded project to reduce the burden of squamous cell carcinoma in Fanconi anemia.
Dr. Wei Tong’s laboratory at the University of Pennsylvania studies the role of a protein
called “Lnk” in regulating stem cell expansion. This newly funded project is based on Dr. Tong’s novel finding that Lnk deficiency restores blood cell function to normal levels in FA mutant mice. Her research team will determine if suppressing Lnk can similarly improve blood cell function in FA patients.
Lastly, FARF is supporting two new, exciting gene therapy projects. These projects use cutting edge technologies to replace FA genes with normal genes in a process called "gene editing". Dr. Jacob Corn and his team at the University of California-Berkeley recently pioneered a method to repair sickle cell genes; they will now harness this method to repair FA genes. Drs. Peter Glazer and Gary Kupfer at Yale University will also explore the use of nanoparticles to deliver the repaired genes to FA patients by simple injection. Both projects will focus initially on repairing FA genes in the bone marrow. If successful, this will prevent bone marrow failure and leukemia.
“None of these projects would be possible without the generous support of Phil and Penny Knight”, Preston said.
Fanconi Anemia Research Fund Welcomes Four New Board Members
The Fanconi Anemia Research Fund is very pleased to welcome new members Rachel Altmann, Nancy Golden, Andre Hessels, and Bill McCorey to the Board of Directors. The Fund’s board is comprised of community leaders and long-time supporters of the organization. The appointment of these four new members will strengthen the work of the board to advance the Fund’s mission. Experts in various fields, FARF looks forward to their individual talents and contributions.
Rachel Altmann; Portland, Ore.
Rachel has been active in the Fanconi anemia community for several years, as an FA parent, a contributor to FARF newsletters, and a fundraiser. She has worked in the education sector for many years, as an environmental educator at Hawai'i Nature Center and most recently as Library Outreach Specialist at Multnomah County Library in Portland, Ore. Her daughter, Nina, succumbed to complications from Fanconi anemia in 2006 at age three. Rachel continues to honor Nina’s legacy by working to advance FA research and support other families who face FA.
Nancy Golden; Springfield, Ore.
A pillar of the education community in Oregon, Nancy has served in a number of leadership roles, including Superintendent of Springfield School District, Chief Education Officer of the Oregon Education Investment Board, and Education Policy Advisor to Oregon Governor Kitzhaber. She is currently a professor of Practice, Educational Methodology, Policy and Leadership at the University of Oregon. A friend of the Frohnmayer family, Nancy has great respect for FARF and is looking forward to advancing the work of the organization.
Andre Hessels; Wayne, Penn.
Andre became involved with the Fund when his two children, Dylan and Joy, were diagnosed with FA in 2013. Since then, he has participated in numerous runs to raise funds, including the New York and Philadelphia marathons. Andre is a seasoned corporate financing specialist who currently works as VP Program Manager for Healthcare & Life Sciences at DLL Financial Services in Wayne, Penn. Originally from the Netherlands, Andre has worked in both Europe and North America as International Finance Manager for Rabobank. He brings a wealth of financial knowledge to the board and is looking forward to expanding his fundraising efforts.
Bill McCorey; Orlando, Fla.
Bill is a long-time FARF supporter, raising funds over the past decade with his annual event, Your Rope Team Mountain Climb. Bill is Senior Vice President and Chief Information Officer for Universal Parks and Resorts in Florida. Previously, he served as Vice President of Global Infrastructure for IBM. Bill is an avid supporter of local and global causes for children. He has completed 40 marathons, including 15 consecutive Boston Marathons. He is also an accomplished speaker who frequently speaks on the power of teams and is working on a book entitled “Who do you want on your rope team?”
Amy Frohnmayer Winn
It is with profound sorrow that we announce the loss of a truly beautiful, fierce, and compassionate soul, Amy Frohnmayer Winn, our dear friend, inspiration, and FARF board member. We pass along a message from Lynn Frohnmayer that was posted on Amy’s Caring Bridge site:
“’I hear a lot of words like "unfair" or "sorry." But if you think about it, aren't these all just bonus years? Am I not just extraordinarily lucky? In this moment, sipping coffee and watching dawn paint downtown Portland in pastels, there is nowhere else I'd rather be." (Two weeks ago)
Amy's capacity to feel gratitude and share love in the most dire of situations was on full display yesterday. The sudden onset of severe breathing problems and the diagnosis of pneumonia prompted her doctors to move her to the Intensive Care Unit where she could get additional breathing support. Friends from high school, Stanford and Portland happened to be visiting this weekend, and made regular trips back to her small cubicle in the ICU. Her exclamations of delight at seeing each visitor were vintage Amy: "It's so wonderful - to look up and see someone else I love walking through that door!" And "How lucky I am - to be surrounded by so many people I love." She expressed gratitude to each visitor- for cards, thoughtful gestures, friendship and love. She recalled minute details of time shared together.
We were all frantically worried, hoping against hope that strong antibiotics would quickly combat her pneumonia and we could soon return to the 14th floor, where a room had been saved for her.
But it was not to be. Throughout the evening her breathing became more labored. Surrounded by her devoted family, Amy passed away at 3:45 this morning. To say that we are all heartbroken, beside ourselves with grief doesn't adequately cover the excruciating sense of loss we feel. We are only comforted by the knowledge that she was surrounded by her devoted family, and the love in the room was palpable.
During the day Amy asked that I read several poems by Mary Oliver, a writer whose work Amy deeply admired. She has always found special meaning in the last phrases of "In Blackwater Woods":
To live in this world you must be able
to do three things:
to love what is mortal;
to hold it against your bones knowing
your own life depends on it;
and, when the time comes to let it go,
to let it go.
I am sure we won't ever be able to "let Amy go." Amy was our teacher, our guide, our inspiration, our love. Like so many of you, we all feel deeply grateful that this unique spirit touched our lives so profoundly. We are all determined to keep Amy forever in our hearts and try to embody, as best as we can, her love for nature, for cherished friends and family, and her enduring sense of gratitude for this far too short life she was given.”
Phil and Penny Knight Pledge Support for the David B. Frohnmayer Scientific Research Fund
EUGENE, Ore., April 5, 2016 – Phil and Penny Knight have pledged a gift of $10 million over the next ten years to support the David B. Frohnmayer Scientific Research Fund, a dedicated fund under the umbrella of the Fanconi Anemia Research Fund (FARF). The FARF Board of Directors established this special Fund to honor co-founder David Frohnmayer, who died in March 2015.
The Knight pledge is a cornerstone gift of FARF’s new $20 million campaign, according to FARF’s Executive Director, Pamela Norr. The campaign is committed to accelerating the pace of clinical trials, drug testing, gene therapies and more effective treatments for children and adults with Fanconi anemia (FA), she said. “A major focus of these game-changing initiatives will be preventing and curing the cancers that are now the primary cause of death in adults with FA. FARF has garnered initial gifts and pledges in excess of $12 million, all devoted exclusively to the Frohnmayer Scientific Research Fund.”
The Frohnmayer dedicated fund is intended to accelerate, not replace, FARF’s ongoing efforts to raise money each year to support scientific research grants and symposia, and to provide education and support services to families devastated by this disease.
“The urgency of this campaign to intensify scientific research is a direct consequence of FARF’s success. Fanconi anemia, once thought to be primarily a fatal bone marrow disorder of childhood, has now been unmasked as a DNA repair disorder that causes cancer in young adults,” said Grover C. Bagby, Jr., M.D., Chair Emeritus, OHSU Knight Cancer Institute. “Thanks in part to research supported by FARF, 80-94% of children with FA now survive bone marrow transplants. As adults, though, they are at extraordinarily high risk for developing cancer, at an average age of 33. Since they can’t tolerate chemotherapy, treatments that are effective for others are out of the question for them,” Bagby said.
As grim as this prognosis sounds, Bagby said, it comes in the midst of an explosion of FA research — especially research that leads to treatment. After 25 years devoted to identifying 19 FA genes, improving bone marrow transplants, and uncovering connections to breast and other cancers, FA scientists are now poised to create less toxic therapies that radically extend lives. These advances will help not only adults with FA, but millions of others with cancer.
“Cancer is the largest cause of death in the FA young adult population. It is my profound hope that this Fund in David’s honor will identify new, effective therapies to prevent and treat these cancers, and give young people with FA the chance to experience a full adulthood,” said Lynn Frohnmayer, FARF Co-founder.
“Phil and Penny Knight’s generosity is a fitting tribute to David,” said Frohnmayer. “More than financial, it is a gift of hope and compassion. It honors David’s boundless optimism and reinforces his firm conviction that dedicated people, working together, can change the world.”
Dave Frohnmayer, Co-founder of the Fanconi Anemia Research Fund, Passes Away
Frohnmayer Family Statement
March 10, 2015
Dave Frohnmayer passed away quietly in his sleep last night. He was 74. Dave had bravely dealt with his quiet battle against prostate cancer for 5 1/2 years. We are devastated by his passing but we are grateful that his passing was peaceful.
Much of Dave’s life was devoted to fighting devastating health crises that enveloped his family. These battles were complicated by the intense public attention that inevitably accompanied his lifelong commitment to public service. He was adamant that his own health issues would remain private. Except for the immediate family and Dave’s closest friends, he was able to accomplish this and continue a full public schedule to the end.
The family will hold a celebration of Dave’s remarkable life at a time to be announced.
Dave is survived by his wife Lynn, his sons Mark and Jonathan, his daughter Amy, his sister Mira and brother John. His daughters Kirsten and Katie and his brother Phil predeceased him.