Holmes, PA – It has been six years since the creation of the HEADstrong Foundation, a lacrosse rooted non-profit organization established in memory of Nicholas Colleluori with the purpose of utilizing the game as a vehicle to promote blood cancer awareness while generating funds to improve the well-being and quality of life for patients and their families.
Led by the Colleluori family and their relentless passion to change the equation for those battling blood cancers, the HEADstrong Foundation has made significant strides in 2012. The month of September is recognized as National Blood Cancer Awareness Month and while many people identify the HEADstrong Foundation for their iconic lime green awareness color, the organization is focusing efforts on marketing their service offering funded through the game in support of the blood cancer community.
Earlier this week, Cheryl Colleluori, HEADstrong President and Nick’s mom officially joined the executive staff in a full-time capacity. Over the past six years Cheryl has worked 80 hours per week balancing a career at Staples while captaining the Foundation. Her drive to grow her son’s vision has never been more HEADstrong than it is today. Her role will allow the HEADstrong Foundation to reach new heights, permitting the organization to realize its full potential. Her primary focus will be on establishing corporate partners, major donors and annual giving, while serving as a compassionate leader and public voice for the HEADstrong Foundation.
“The past six years have been an amazing experience. We have dedicated our lives to sharing Nick’s legacy and helping others in his name. I am honored to represent my son Nicholas and lead the organization he began in a full-time capacity. The transition, while emotional, has been incredibly uplifting; and while the decision to leave a 20 year career was difficult, I realized what we created was too special and that it required our full-time commitment and attention. We are investing in ourselves and establishing a team to allow for growth and expansion. We need to be there for our patients.” says Cheryl Colleluori.
In 2012, the HEADstrong Foundation began providing resources on a national level. The HEADstrong Foundation’s service offering is focused on improving the quality of life, promoting normalcy and supporting patients and their families while they are undergoing treatment for blood cancers. With continued support from the lacrosse community, the HEADstrong Foundation has been able to strengthen its commitment to providing resources to people throughout the country. By providing financial assistance, funding innovative research, opening Nick’s House™, establishing their patient advocacy network and many other services, the organization feels that it is only in the first quarter of this game and that there is much more it can offer the blood cancer community.
“We are incredibly humbled to have the continued support of the lacrosse community. Our passion for making a difference is fueled by the support and love that we feel through the game. 2012 has been an incredible year for our organization and we believe it is essential to share with our supporters the invaluable services that we have created and the resources that we are providing to patients and their families dealing with blood cancers. We want people to know the good work that we are doing as well as the impact of their contributions.”
“Being a family that has walked in the shoes of the population of people we are supporting, we have a full understanding of the hardships that people are going through on a daily basis. Whether financially, emotionally or physically we are there as a resource to provide support. We value the importance of a family support network and the contribution of being a constant positive for patients and their families during a time when they feel alone in the world.”
In 2012, recognizing an increase in rates of the occurrence and reoccurrence of blood cancers the HEADstrong Foundation has extended the range of patients to now include both pediatrics and seniors. “Blood cancer does not discriminate; it affects men, women and children. We are proud to now offer assistance to patients of all ages affected by this disease”.
Treatment, transplants and therapies for blood cancers often require weeks and sometimes months of inpatient care. In addition, not every hospital specializes in research and medicine for blood cancers and often times patients have to travel great distances to receive care. Many specialized treatment centers are located in major Metropolitan areas and patients and families are faced with tough financial decisions. Often times, families cannot accompany their loved one for treatments. Flights, extended hotel stays, meals and other expenses associated with traveling can become costly and that is why the HEADstrong Foundation operates Nick’s House™. Nick’s House™ was constructed to provide complimentary lodging and the comforts of home to patients and families traveling to Philadelphia for specialized care. Nick’s House™ provides an invaluable service saving patients and their families $165,000 in travel expenses annually.
“To date Nick’s House™ has been our greatest accomplishment. Honestly, it has become a blueprint for our expansion. As patient advocates we take great pride in operating a facility dedicated to providing our patients and their families with what we call “Home Field Advantage”. Our hope is to open more of these facilities around the country.” says Cheryl Colleluori
Identifying the cause of blood cancers and exploring ways of combating the disease with targeted immunotherapies is also a focus of the HEADstrong Foundation. Currently, the HEADstrong Foundation funds three research portfolio’s including its Nicholas E. Colleluori Lymphoma Research Fund at the Abramson Cancer Center at the Hospital of the University of Pennsylvania as well as research being conducted at the City of Hope in Duarte, CA and the research efforts of the Leukemia Lymphoma Society in White Plains, NY.
“Traditional medicine did not work for Nicholas and so the research and therapies that we have elected to support are both targeted and specialized. We are privileged to work directly with Dr. Stephen Schuster, Director of Lymphoma at the Abramson Cancer Center; he is a renowned researcher and a respected innovator in the field and treated our Nick. We also feel it is important to support research specific to Nick’s disease type on both the East and West coasts.” – says Cheryl Colleluori
Sharing their personal experience and being a resource to newly diagnosed patients is another way the HEADstrong Foundation is making a difference. Founder Nicholas Colleluori spent a significant amount of his time counseling new patients and felt it was important for the HEADstrong Foundation to focus on helping patients navigate their journey through cancer by providing emotional support. Over the years, the Colleluori family has continued to make themselves personally available to patients and families with questions and guidance. In 2012, the HEADstrong Foundation launched a patient advocacy support network group to put patients and survivors in touch. Through their accredited internship program the HEADstrong Foundation is also mentoring student-athletes and empowering them to be part of the cause.
“Our experience as parents and family members is completely different from that of a patient. While I was present during Nick’s treatments I still have no clue what it is like to have gone through chemotherapy or the side effects of medicines. Through our patient advocacy group we have survivors that have championing the effort to provide support to newly diagnosed patients.” says Cheryl Colleluori
The HEADstrong Foundation has always taken a very grass roots approach to marketing with the game. During the spring, summer and fall lacrosse seasons it is common to find a member of the Colleluori family leading a booth in vendor villages across the country.
“It takes a lot of dedication and a lot of time but it is a sacrifice that we are willing to make to educate people and share Nick’s story. We have had the pleasure of meeting some amazing people over the years and have heard some incredible stories of hope. We always enjoy being part of tournaments and special lacrosse events around the country. This summer we were recognized as the charity partner of the 2012 MLL All-Star Game and Championship Weekend. If we can inspire one person then our mission is complete. Our approach is to always engage people as if they have never heard of our organization, operate with the highest levels of integrity and use Nick’s vision as a road for success.”
With new events, teams, partnerships, products, advertisements and campaigns in the works the future is looking as bright as their signature lime green awareness color. To further the HEADstrong name this year, the organization has also introduced the Tour for a Cure, a series of outreach tournaments in new lacrosse markets with proceeds benefiting the host sites’ local blood cancer community.
The Foundation’s awareness merchandise continues to be a driving force for generating much needed funds to continue its mission.
For more information go to www.HEADstrongfoundation.org and for the latest in the HEADstrong Foundation’s arsenal of awareness products, visit www.shopHEADstrong.com. Learn how you can help the HEADstrong Foundation “Get a HEAD of Cancer.”