CHERUBS Awards Two $10,000 CDH Research Grants
SUMMARY:
Raleigh, NC - CHERUBS, a non-profit organization based in Wake Forest has awarded $20,000 to two Congenital Diaphragmatic Hernia Research facilities based on a contest held this month on their Facebook page and a grant raised by the family of a baby lost to CDH.
Congenital Diaphragmatic Hernia occurs when the diaphragm fails to fully form, allowing abdominal organs to migrate into the chest cavity and preventing lung growth. It affects 1 in every 2,500 babies, representing approximately 1,600 babies in the United States each year, half of which do not survive.
CHERUBS is the world’s largest organization for CDH and was founded in Creedmoor in 1995. It serves over 4,200 patients and families in 54 countries. Even though the charity is 17 years old, it still struggles for funding and is powered by volunteers and donations. All of CHERUBS services are free to families affected by CDH. Though small, this determined group of parents have done amazing things for CDH awareness, research and support.
$20,000 makes a great deal of difference in CDH research and support, for a cause where there is very little awareness and even less research funding. With CDH families rallying 100’s of people to donate and purchase raffle tickets this year to raise $10,000 and 1 family raising $10,000 alone themselves, this money is hard earned for a cause very close to all their hearts.
Local Nonprofit Raises and Awards $20,000 for Research Against Deadly Birth Defect, Congenital Diaphragmatic Hernia
12-20-2012
Raleigh, NC - CHERUBS, a non-profit organization founded to help families of children born with Congenital Diaphragmatic Hernia (CDH) awarded their first $10,000 research grant in 2011 to the CDH Genetic Lab at Massachusetts General Hospital. They hoped to double that amount in grants in 2012 and with the help of charity members they reached that goal.
For many months during the summer and early fall, members of the charity raised money by selling 50/50 raffle tickets. They were able to raise $9,030 for research and a $9,030 raffle prize that was awarded at their annual Masquerade Ball in Raleigh on October 20th to local citizen, Mark Stamper. Combined with donations the charity had their first $10,000 grant.
“Our Vice-President, Ashley Barry, came up with the genius idea to allow our members to vote on who would receive the grant through a contest on Facebook. This allowed the families to participate in the decision making and relieved our Board of having to make such a difficult choice between so many wonderful research institutions. It also helped us to raise a large amount of awareness of Congenital Diaphragmatic Hernia through social media” says CHERUBS President and Founder, Dawn Torrence Williamson.
Raise awareness they did with hospitals competing for votes by posting to 1000’s of their own Facebook fans and sending out e-mails to their mailing lists asking for votes. CHERUBS Facebook page reached close to 11,000 fans and 2,000 people shared the contest poll.
“Over 8,000 people voted in our little contest” says Williamson. “It got very heated between 2 hospitals when they started shifting between first and second place over the final 2 days. E-mails were flying, posters were being hung up all over towns, 1,000’s of Facebook statuses were asking for votes. Families are very loyal to their children’s surgeons and hospitals and you could see that reflected in the voting. I think all of us were on pins and needles until the very end”.
In the end, The Center for Fetal Diagnosis and Treatment at CHOP (Children’s Hospital of Philadelphia) won with 3,474 votes to Shands Hospital for Children’s 3,380 votes.
Also in the contest were St. Louis Fetal Care Institute, UCSF Fetal Treatment Center, the Congenital Diaphragmatic Hernia (CDH) Genetic Research Study at Massachusetts General, DHREAMS Research Study (Congenital Diaphragmatic Hernia) at Columbia University, Baylor University Medical Center at Dallas and Boston Children's Hospital. All centers world-renowned for their research on Congenital Diaphragmatic Hernia.
The charity added some suspense to the mix with the announcement that another research facility will also win $10,000, making that $20,000 going to CDH Research.
“One of our members, the family of Tatum Ashley Larsen, did an extraordinary thing this year. They raised over $10,000 on their own through donations to our charity in her memory. They requested that DHREAMS receive a grant and we are honored to be a part of this generous gift to help other babies born with CDH” says Williamson.
Tatum’s family released the following statement; “After 9 months of excitement and anticipation Tatum Ashley Larsen was born on September 14, 2012. When she was born, she opened her eyes and looked at us but then she didn't cry. Unbeknownst to us, she suffered from Congenital Diaphragmatic Hernia. She was born at 1:14pm and passed at 2:15pm the same day. She weighed 5.9 pounds and was 18 3/4 inches. We have raised over $10,000 in her honor for CHERUBS and are excited to have this money be donated in her name to the DHREAMS research foundation at Columbia, where we hope a cause will be found for this defect. This donation gives her such purpose in this world and helps give us peace.”
The charity hopes to present both facilities with ceremonious large checks during events on the International Day of Congenital Diaphragmatic Hernia Awareness on April 19th, even though the cashable research grant checks will be on their way on December 31st, ending an incredible year for CHERUBS.
“In 2012 we marched on Capitol Hill and in 7 other large cities on April 19th, we introduced Senate Bill S.3396 with Senators Jeff Sessions (R-AL) and Ben Cardin (D-MD), sent out over 300 care packages to families of newborns with CDH, held an international conference for families in San Francisco and so very, very much more. We are very blessed with wonderful members and volunteers. 2012 has not been a bad year for our grassroots charity with the nickname ‘the little charity that could’, run on a shoe-string budget and loves of determination. Never underestimate parents working hard to save the lives of their children” – says Williamson.
The charity will be raising money for many different research centers in 2013 on April 19th with Parades of Cherubs at several hospitals and a national fundraiser.
