At CURE Childhood Cancer, we believe there is power in collaborations. Those who wish to impact pediatric cancer are stronger walking together than separately. Because of this, several years ago, CURE established a vehicle in our Named Funds for working together with families under the CURE umbrella but specifically honoring the family’s journey and allowing the family to designate how funds raised will be utilized to further research or support other families in need.
The Press On Fund was CURE’s first Named Fund, and by all accounts, the partnership between the families involved and CURE has been both meaningful and extremely effective.
A Time to Press On.
What began as an outpouring of local support for Patrick Chance, a young boy with stage IV neuroblastoma, has become a national movement since Press On’s mission was expanded to target AML research because of the Chances’ close relationship with Brennan Simkins, a young boy with AML, and his family. “As a fund spearheaded by two families with children fighting these two diseases, our supporters recognize the heartfelt sense of urgency and determination to invest in research designed to identify and treat very specific genetic mutations and cellular pathways to maximize tumor kill and minimize collateral damage. This idea is not new; our method of achieving it is,” says Stephen Chance, Patrick’s dad.
As the Chance and Simkins families have learned the hard way, even fewer options are available for children with relapsed AML and neuroblastoma, and especially second relapsed patients like Patrick and Brennan. Through the initiative of these two families, both hailing from Augusta, Georgia, and both living on the front lines of childhood cancer, and the support of CURE, Press On’s mission is to identify and fund novel and targeted therapies that are not currently available for neuroblastoma and AML, which have the poorest survival rates of all pediatric cancers. The lifelong effects of current treatments for these diseases can be equally as threatening.
Relatively small patient populations result in inadequate governmental funding, a lack of entrepreneurial incentive, and desperate, fractionated efforts by families of childhood cancer victims to find, fund, and implement “magic bullets” for children and families with no time to lose. “We are in a race to find a CURE for our children and all of their friends whom we have met along the way, and it is going to take nothing less than a national philanthropic effort to do just that,” believes Erin Chance. Uniquely, Press On’s 2010-2011 grants have been complemented by grants of other grassroots, parent-driven organizations, either with Press on’s leadership, or in one case, serendipitously.
Press On’s inspiration and commitment to a cure.
“The inspiration for Press on is both profoundly tragic and profoundly praiseworthy,” says Stephen. “There is no more profound sense of urgency than that of parents fighting for the life of their child and for other children they know who suffer and too often die. Living this reality ‘on the front lines,’ our family, the Simkins, and many other like-families must assume the role as the ‘general in the tent.’ Our government cannot legislate motivation, and private enterprise can’t generate profit where the market is less than profitable. But there are many people who understand that we are dealing with life-and-death consequences of children from the perspective which we can convey from the battle field. We will turn over every rock to identify the science that stands the best chance of curing our kids, and we will certainly open new doors which may extend their lives until a cure is found. Cancer has changed our lives forever, therefore, we will Press On until we find cures for these diseases in our lifetime,” says Chance.
“As a result of the honest, deep-seeded motivation of our families,” says Turner Simkins, Brennan’s dad, “we find that raising funds has involved little more than simply telling the story and facilitating critical mass. Our investors know that everything they invest with Press On will be directed to a new research initiative. Thanks to CURE’s commitment to each of its named funds, including Press On, we have no real overhead to deplete investment dollars, so we are able to look people in the eye and let them know that we are as serious and as efficient as we can be.”
“The donors of the Press On fund enjoy the best of all worlds: the passion and specialized knowledge of two families who are fighting neuroblastoma and AML on the front lines and the strength and accountability of CURE, a long standing nonprofit organization,” remarks Kristin Connor, Executive Director of CURE.
In the spirit of their organization’s moniker, the story of both Patrick Chance and Brennan Simkins represent stories of faith, hope, love and perseverance. “We have been told by many medical professionals that we have already done more than most families would do for their children, implying that palliative care for our sons is not an option to be ashamed of,” says Simkins. “We Press On, not in spite of this heartbreaking choice, but because of it. Brennan has recently endured an almost unprecedented fourth bone marrow transplant in 18 months which we believe cured his AML treatment-induced aplastic anemia, a stubborn virus and ultimately will prove to have cured his aml. he is a champion among warriors. Patrick is fighting to achieve a third remission, too, and is currently undergoing treatment. As long as our children and the countless other warriors and angels we have met along the way must fight these diseases, and their treatments, we will be motivated to stay one step ahead of the curve. We believe that a cure is possible in our lifetime. Because of that, we Press On. And that we will do for the rest of our lives.”
Press On has granted $300,000 to researchers at children’s hospital of Philadelphia, Memorial Sloan Kettering Cancer Center in New York and St. Jude Children’s Hospital this year alone. Press On hopes to announce another $200,000 in grants before June 30, 2011. For more information about CURE’s Named Funds, please click here or contact Kristin connor, Executive Director, at 770.986.0035 ext. 24 or kristin@curechildhoodcancer.org.
