ORGANIZATION SPOTLIGHT – BY LYNNE McENIRY, MFA
The Colleen Giblin Foundation’s name changed to Hope for Children Reasearch Foundation at their recent 30th Anniversary Celebration – but their focus remains the same.
At one time or another in our lives, most of us have probably heard this tried-and-true affirmation by cultural anthropologist, Margaret Mead: “Never doubt that a small group of thoughtful committed citizens can change the world; indeed, it’s the only thing that ever has.”
It is no surprise that her words resonate for me while talking with three women whose passion and dedication are central to the work of the Colleen Giblin Foundation throughout its 30-year history and who continue their commitment as the Foundation embraces a new name and renewed assurance that the research and support will continue well into the future.
Meg Minassian, Shelly Allen, and Michelle Oates, all women of selfless devotion to the Colleen Giblin Foundation and to the many, many families it has served and continues to actively serve, would be among the first to say that they have been blessed to work alongside more than 6,000 steadfast donors and volunteers. This is no small number. Every single person counts, and in the area of medical research, much more human and financial support is critical to diagnoses, treatments, and cures. “I go to the things I love / with no thought of duty or pity,” writes the poet, H.D. These women, who go to the things they love, through their personal pledge to the Foundation, are certain that many others will want to join them, especially with the exciting announcement of the Foundation’s name change to Hope For Children Research Foundation at their recent 30th Anniversary Celebration.
While the name has changed, the focus remains the same. As noted on the foundation’s website, “The story began in 1985 when four-year-old Colleen Giblin died from an inoperable brain tumor. In the final stages of young Colleen’s battle with cancer, her parents, Paul and Vickie Giblin, made the decision to devote themselves to sparing other children, and their parents, from the same anguish that they were experiencing.”
The Giblins knew that research was the only way to find new treatments and cures for children with neurological diseases. They set immediately to the work of establishing this Foundation, which would support research at Columbia Presbyterian Medical Center, one of the foremost research hospitals in the nation. Michelle Oates, Board of Trustees President, came on board with the Foundation in 1985 during its first year and has been a handson member ever since then. Michelle said that she had started a Bible study with the wives of other professional sports players.
After many conversations during Bible study, they recognized their need to be proactive, to use their public exposure to do what they could for children. She and her husband, former New York Giants football player, Bart Oates, were blessed with healthy children, and she felt deeply that she had a responsibility to do something for the families of children who were facing great medical challenges. Michelle recounted how Vicki Giblin came to her just after the death of her daughter, Colleen. Vickie told Michelle that she couldn’t find anyone who was doing brain tumor research. Vickie was determined to work toward the day when no other parent would hear the words, “There is nothing more we can do.” After Vickie came asking for help a third time, Michelle felt compelled to learn about the need for research for children’s neurological diseases and spent a lot of time praying. Then, she had this epiphany: “If we don’t do something, we will never stop sending children on their last vacations.”
What came to Michelle next was this very clear image of a horse behind a cart. But a metaphor began to take shape, and the horse moved to the front of the cart, hitched itself and began to move the cart forward. She could see the wheels of the cart turning and knew at that moment that she would begin to work diligently to ensure that these parents would be attending their children’s graduations, not last vacations; planning their children’s weddings or new careers – not their funerals. Michelle said she then immediately called Vicki and said, “I’m all in. And, when I’m in, I am ALL in – 100 percent.” And she has been ever since.
When, more than a year ago, the Foundation began plans to celebrate its 30th Anniversary, along with some of the people who have been responsible for its accomplishments over these first 30 years, board members also faced this ever-present fact: “Research is a tough sell. It’s very tough to sell a graveyard rather than a child’s last wish,” Michelle said. She continued: “We have to get word of what the doctors are learning in the labs out into the world as quickly as possible so that research and discovery can be used to find treatments and cures. I am fortunate to see the work of the laboratory for kids who are growing up. It is an encouragement for me to see so many kids, including Danny Minassian and Bobby Allen leading full and active lives.” She praised their mothers, saying how important the work done by others, including Meg Minassian and Shelly Allen, is pivotal to both spreading the news of the Foundation and to finding and fostering the donors who provide for this research.
Meg Minassian, Board of Trustee member and the Foundation’s only paid employee, said that it began as a familybased, private foundation which, after eight years, became public to alleviate funding restrictions. Doing so gave them the opportunity to seek and obtain financial resources necessary to back the research. Meg came on board with the Foundation in 1989 as volunteer and became the Executive Director in 1995. She is grateful and excited to recognize her 20 year anniversary with the Foundation, which is coming up in October. The name change from The Colleen Giblin Foundation to Hope For Children Research Foundation became official on Feb. 21st, a few weeks before this article was published. Meg pointed out that the Foundation has always been about HOPE, and that the name, Hope For Children Research Foundation , is more universal than the foundation’s original name. She and Michelle agree that every bit of the work of the Foundation is embodied in the three words of this new, simple, but profound new name. “The mission and what we do is in our name; we don’t have to explain,” Michelle said. Meg added, “This name will mean something all over the world, which will help us to support the work of Dr. De Vivo. This rebranding will take the Foundation to the next level with worldwide range.”
The Dr. De Vivo that Meg referred to is Darryl C. De Vivo, MD, Board of Trustees member and Founding Director of the Colleen Giblin Research Laboratories for Pediatric Neurology. Dr. De Vivo was little Colleen Giblin’s doctor, and Paul and Vickie realized right away the significance of his work and the value of their creating a foundation to ensure its continued existence. For Meg and her family, Dr. De Vivo’s work is also quite personal. Meg said that her son, Danny, is a success story in part because of the breakthrough research of Dr. De Vivo and the medical team a the Colleen Giblin Research Laboratories. Danny was a typical baby until he suffered a catastrophic neurological disorder in his sleep when he was 20 months old, which resulted in a profound seizure disorder. Meg and her husband, Don, who is also a Board member, were told that their son would likely never live a full life, never leave a wheel chair. Danny endured many medical tests, procedures, and severe complications. At age eight, he went for surgery at Columbia University Medical Center to disconnect the damaged frontal left hemisphere to alleviate the now-constant seizures. Meg recalls: “After 14 hours of surgery, upon awaking, Danny looked at me and said, ‘Hi, Mom.’” Today, Danny, who served for years as Foundation’s “Poster Boy,” is 28 years old, and, his mom says, “truly, truly a miracle.
Danny is healing his whole family.” Danny is currently applying for independent living, is involved with sled hockey, and loves time with his extended family, travel, and Broadway. He works at Ramsey Veterinary Hospital, where owner, Dr. Scott Smith, says that Danny gives back more to the pets and their families than he ever asks for himself. Meg said none of this would be possible without the unwavering commitment and tireless work of Dr. De Vivo and his colleagues at the Colleen Giblin Research Laboratories. “His work has saved my son’s life, has given a better quality of life to Danny and our whole family and to so many other children and their families. I will forever be committed to this Foundation.”
Like Meg, and Michelle, Shelly Allen is a model of dedication and perseverance to raising awareness of and funds for children’s neurological and cancer research. In 2008, Shelly and her husband, Christopher founded, together with some family and friends, the Milestones for Children Foundation. Its tagline is: “Curing rare diseases one at a time” In partnership with the Colleen Giblin Foundation, Milestones for Children is focused on finding a cure for Glut 1, the disease Shelly’s 12-year-old son, Bobby, was diagnosed with as an infant. The Allens, who live near Boston, were actively involved with the Colleen Giblin Foundation and believed they could effectively expand the reach of the Foundation if they created a partnered organization in Boston. Shelly said, “We decided to be a partner foundation to do our part in moving the research work forward.” Like Danny, Bobby spent a number of his early years as a public face for the Colleen Giblin Foundation. Bobby had stopped breathing in the middle of the night when he was eight weeks old. Dr. De Vivo’s care and work through the Foundation were responsible for his life-changing diagnosis soon after. Dr. DeVivo discovered the Glut1 DS syndrome in 1991 and assumed the work of finding a way to diagnose and someday cure it. Shelly became deeply involved with the Foundation soon after.
Right now, the only treatment for Glut 1 is the extremely restrictive Ketogenic Diet. Shelly says that Bobby is amazingly blessed. Although the diet is so limited, Bobby does not self-limit, and he has a full and active life. He loves to play sports, especially lacrosse, basketball, and water skiing, and he does very well academically. His friends are central to him. His favorite thing to do is hang out with the guys. Shelly said that despite how challenging his diet can be, Bobby never shies away from parties or other events involving food. “Over the years people have been just amazing. Room mothers have gone out of their way to prepare snacks especially for Bobby, and neighbors make sure they have treats just for him on Halloween.” Shelly wants the parents of kids living with Glut 1 or any other disease to know that, “Hope is based in reality.” That Bobby, who Shelly describes as “a unique and sweet soul,” can live a full life, is how it can happen for other children, too. She urges families to live in the spirit of hope.
Looking forward with hope, Bobby most wants a cure for Glut 1, so he can get off the diet. Finding that cure is the sole focus of Milestones for Children. Shelly says that with the work of Dr. De Vivo and others in the research lab, Glut 1 looks like a curable disease. “The science is there,” she says, and, “As a parent, knowing that this is curable and knowing that money is the only thing standing between the research and a cure only makes me work harder to engage and educate individuals, to seek out generous philanthropists and adventure capitalists.” Shelly is also dedicated to spreading the word of all the positive work that has been done over the last 30 years of the Hope for Children Research Foundation, the research lab, and their partners. She said, “We’ve come a long way, and it looks like we can cure a real debilitating disease that was first diagnosed around 1990, within one generation from now.” Shelly recognizes the many, many parents and friends who have supported the work and spread the word over the years and urges them to keep up this fundamental effort. Each of these women said it is important to know that Hope For Children Research Foundation is not a proprietary foundation.
As discoveries are made in the research labs, they will be shared with the world so that cures can become realities. Meg stated: “My goal and the goal of every volunteer of this Foundation, of everyone who works in the labs, is to give not only my child, but every child the best quality of life, and research is forefront for making this happen. Many people who are otherwise generous don’t think about the research behind the treatment and cure, that research is both vital and costly. Yet, the effects of research that can be done when people give financial support to the labs are truly life changing and life-saving.”
Although fundraising is essential to research, Hope For Children Research Foundation is equally committed to raising awareness for the work at the research labs—and how the research positively changes the quality of the lives of children living with one of the more than 600 neurological diseases affecting them, as well as providing knowledge and support for their families. Future work of the Hope For Children Research Foundation also focuses on engaging and educating the general public.
The journey to the Foundation’s name change is already moving forward with the anticipation of all the possibilities it brings. This past December, the Foundation held the “Hope for Children” Tricky Tray, the first event to include what is now Foundation’s new name. “Hope for Children” had previously been used as a tagline during the full history of this organization that was started in honor of young Colleen Giblin who, following her death, became an inspiration for life. During her welcoming remarks at the 30th Anniversary Celebration, Michelle Oates enthusiastically announced the Foundation’s name change. Michelle reminded the patrons and honored guests that children do not understand not having hope. It is in the spirit of innocent children with no agenda that the Foundation’s rebranding will help all involved to reach farther, and work harder, for treatments and for cures.
The Colleen Giblin Research Laboratories for Pediatric Neurology will maintain its name, as will the Colleen Giblin Annual Lecture Series. The 2015 Lecture will be delivered on Tuesday, April
7th by Professor Joseph G. Gleeson, Laboratory for Pediatric Brian Diseases, Howard Hughes Medical Institute, The Rockefeller University, New York City. Professor Gleeson has made seminal contributions to our understanding of genetic brain diseases and new therapeutic interventions. The current Hope For Children Research Foundation logo resides in the right corner of the website’s homepage, opposite the original sketch of a girl who actually is
Colleen Giblin. The website will be refurbished over the next month to visually and textually reflect some changes that will widen the exposure of the Foundation. The great American poet, Walt Whitman said, “When I give, I give myself.” Meg, Shelly, and Michelle truly live in this spirit of selfless giving. Their leadership through this name change will surely continue to play a central role in bringing Hope For Children into the lives of many others. •
ABOUT THE AUTHOR:
Lynne McEniry, MFA: poet, presenter, mentor, editor, with poems and reviews in 5 AM, The Stillwater Review, Paterson Literary Review, The Lake Rises Anthology, and others. She won Honorable Mention for the Allen Ginsberg Poetry Award and was nominated for a Pushcart Prize. McEniry is a regular guest editor for Adanna Literary Journal for which she edited special issues, including “How Women Grieve” and “Hurricane Sandy: Students Speak Out.” She is the director of the Academic Success Center and adjunct professor at the College of Saint Elizabeth in Morristown, NJ.