Robert's Program | Ways to Help

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Taking action against sudden unexplained death in pediatrics (SUDP)

In 2010, Taylor Cosmas died as a result of SUDP at just 5 months old. Determined to raise awareness of SUDP, her parents Mark and Katie Cosmas organized a 170-person team called “Team Taylor” to participate in a fundraising run.

That first year, they raised $4,000 for a national Sudden Infant Death Syndrome (SIDS) organization. Inspired by their success, Mark and Katie upped the ante, starting their own event, Team Taylor’s Arcadia Fun Run, and have raised more and more each year. In the meantime, they still searched for answers to Taylor’s unexplained death.

SUDP research at Boston Children’s Hospital

After extensive research, the Cosmas family’s quest for answers led them to Boston Children’s, where neuropathologist Hannah Kinney, MD, and palliative care pediatrician Rick Goldstein, MD, were leading the charge against SUDP. Under the auspices of Robert’s Program, the doctors and their team are conducting groundbreaking research connecting SUDP to abnormalities in the developing brain. In addition, Robert’s Program provides comprehensive clinical care to Massachusetts families suffering the unexpected loss of a child under age three.

Based on the success of their previous fundraising efforts, Mark and Katie formed a 501(c) (3) Foundation, Three Butterflies, to distribute the monies raised to the best and most active researchers in the country. In July 2014, the couple proudly presented Kinney with $75,000.

Three Butterflies’ efforts just keep growing — in 2016 the foundation raised $100,000 for Boston Children’s.

Creating your own event

Many bereaved families, like Katie’s, find solace in taking action. Whether it’s a neighborhood yard sale or a company golf tournament, your event can help us fight SUDP. And our team will help you make it a success. To get started, register your fundraiser at www.bostonchildrens.org/fundraisers. We will follow up to help you make your idea a reality. Says Katie, “It’s ok to start small, like we did. Just know that you can make a difference.”

Honor and memorial giving

Lynnette Lowrimore, whose grandson Barrett Edward Tallman died as a result of sudden infant death syndrome (SIDS) in 2012, also finds meaning in trying to spare others the suffering her family has endured. After discovering the promising work taking place at Boston Children’s, she established a fund at Boston Children’s to honor Barrett’s legacy and support Kinney, Goldstein and their team.

In addition to making her own contributions to the fund to mark special occasions — birthdays, Mother’s Day and Father’s Day or to thank someone for a kindness — Lynnette has inspired others to do the same. She has raised nearly $100,000 and counting. Barrett's parents have also hosted an annual event, “Biking for Barrett,” which has raised more than $50,000 for the program.

In lieu of flowers…

Bereaved parents may wish to honor their child’s memory by suggesting that instead of sending flowers, friends and family consider donating to a specific program or organization in the child’s name. To support Robert’s Program at Boston Children’s, family and friends may wish to donate online by going to bostonchildrens.org/RobertsProgramGiving or by sending a check made out to Boston Children’s Hospital, including the child’s name and “to benefit Robert’s Program” in the memo line, and mailed to Boston Children’s Hospital Trust, 401 Park Drive Suite 602, Boston, MA 02215-5301.

Our hearts go out to all families who have experienced the devastating loss of a child. On behalf of the children who have left this world too soon, we pledge to work tirelessly in pursuit of answers.

Make a gift to Robert’s Program today, or contact Mary Gannon at mary.gannon@chtrust.org or 617-355-5333.

Boston Children’s is so much more than a hospital—it’s a community of researchers, clinicians, administrators, support staff, innovators, teachers, patients and families, all working together to make the impossible possible. ”
- Sandra L. Fenwick, President and CEO

Boston Children's Hospital
300 Longwood Avenue, Boston, MA 02115
For Patients: 617-355-6000
For Referring Providers: 844-BCH-PEDS | 844-224-7337

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