SUMMARY:
Raleigh, NC - CHERUBS, a non-profit organization based in Wake Forest, worked with Senators Jefferson Sessions (R-AL) and Benjamin Cardin (D-MD) to gain national awareness for the birth defect, Congenital Diaphragmatic Hernia, through Senate Resolution 85: A resolution designating April 2013 as “National Congenital Diaphragmatic Hernia Awareness Month”.
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.
PRESS RELEASE: Grassroots Parent Group Works With Senator Sessions to Raise Awareness with Unanimous Senate Passing of April, 2013 “Congenital Diaphragmatic Hernia Month” Resolution
FOR IMMEDIATE RELEASE
Media Contact:
Dawn Williamson
919.610.0129
awareness@cdhsupport.org
WAKE FOREST, NC (April 8, 2013) – On March 26, 2013, U.S. Senators Jeff Sessions (R-AL) and Ben Cardin (D-MD) introduced Senate Resolution 85.
Raleigh, NC - CHERUBS, a non-profit organization based in Wake Forest, worked with Senators Jefferson Sessions (R-AL) and Benjamin Cardin (D-MD) to gain national awareness for the birth defect, Congenital Diaphragmatic Hernia, through Senate Resolution 85: A resolution designating April 2013 as “National Congenital Diaphragmatic Hernia Awareness Month”.
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.
PRESS RELEASE: Grassroots Parent Group Works With Senator Sessions to Raise Awareness with Unanimous Senate Passing of April, 2013 “Congenital Diaphragmatic Hernia Month” Resolution
FOR IMMEDIATE RELEASE
Media Contact:
Dawn Williamson
919.610.0129
awareness@cdhsupport.org
WAKE FOREST, NC (April 8, 2013) – On March 26, 2013, U.S. Senators Jeff Sessions (R-AL) and Ben Cardin (D-MD) introduced Senate Resolution 85.
U.S. Sen. Jeff Sessions (R-AL), along with his colleague Sen. Ben Cardin (D-MD), issued the following statement on March 22nd after the unanimous approval of Senate Resolution 85, designating April 2013 as Congenital Diaphragmatic Hernia (CDH) Month:
“I am pleased that the Senate has unanimously declared April 2013 as National Congenital Diaphragmatic Hernia Awareness month. By joining together, we can help raise awareness of this serious birth defect. Early detection, good prenatal care, and awareness are vital for the survival, and healthy future, of the children born with this defect.”
On Friday, April 19th, U.S. Senator Jeff Sessions (R-AL) will meet with families affected by Congenital Diaphragmatic Hernia who are participating in a “Parade of Cherubs” in Washington, DC, to raise awareness of the deadly birth defect. Sen. Sessions’ three-year old grandson, Jim Beau, is a CDH survivor. In Jim Beau’s honor, the Senator’s family will take part in the event, and Sen. Sessions is requesting a Congressional Bill for the benefit of Congenital Diaphragmatic Hernia Research.
Families will also meet with members of the House of Representatives on April 18th, which will be followed by a reception that evening on Capitol Hill to celebrate the passing of the Resolution in the Senate.
“CDH awareness and research is very important and especially to me because my grandson, Jim Beau, was born with CDH in 2009,” said Senator Sessions. “This is a life threatening birth defect that not many people have heard about. Only 50 percent of the babies survive and that number could and should be higher. Research and awareness are key and we are excited that CHERUBS chose to parade in DC this year.” said Senator Sessions at last year’s event in Washington, DC.
CDH occurs when the diaphragm fails to form or to close totally and the opening allows abdominal organs into the chest cavity, inhibiting lung growth. CDH affects approximately one in every 2,500 babies, or about 1,600 babies in the United States each year. It is as common as cystic fibrosis and spina bifida. Roughly 50 percent of babies born with CDH do not survive. The cause is still unknown.
The parade has been organized through CHERUBS, a North-Carolina based grassroots nonprofit organization started by Dawn Williamson whose son, Shane, died in 1999 at the age of six from CDH complications. Children donned in wings will begin the three-mile walk at 11:00 a.m. at the Lincoln Memorial; they will travel past the Washington Monument and the White House, and conclude at the U.S. Capitol Building.
“We are thrilled to have so many survivors and families affected by CDH as well as the medical community come out to support the cause,” said Dawn Williamson, president and founder of CHERUBS. “Not only are we celebrating the passing of this very important Senate Resolution for CDH awareness but our members have been gathering Proclamations from Governors and Mayors around the country as well to help raise awareness on a local level.”
Several other cities across the U.S. are also hosting “Parades of CHERUBS” on the same weekend including, New York, Chicago, Denver, Seattle, Dallas, Peoria, Portland, Salt Lake City, Phoenix, St. Louis and Philadelphia. In addition to the parades, there will be a CDH Baseball Night with the Las Vegas 51’s, a Sky Dive Fundraiser in Shropshire, UK, and both the CN Tower in Toronto, Ontario, Canada and City Hall in Dublin, Ireland, will be lighting up for CDH Awareness. Many families will also be holding fundraisers and awareness events in honor or in memory of their children born with CDH. A virtual Parade of Cherubs has been set up on Facebook and Twitter so people can show their support by uploading photos and videos.
April 19th is recognized as the International Day of Congenital Diaphragmatic Hernia Awareness by families in 60 countries.
Shands for Children at the University of Florida in Gainesville, DHREAMS CDH Genetic Lab at Columbia Presbyterian Hospital, the Congenital Diaphragmatic Hernia (CDH) Genetic Research Study at Massachusetts General, the St. Louis Fetal Care Institute, OSF Saint Francis Medical Center and The Center for Fetal Diagnosis and Treatment at CHOP have all been integral in raising CDH Awareness this year by sponsoring or assisting with Parades of CHERUBS at their respective hospitals.
If you would like to help spread the word, or to learn more about CHERUBS and the upcoming parades, please visit www.cdhawarenessday.org
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Additional Events:
Washington DC – Charity members will meet with members of the U.S. House of Representatives on April 18th with a reception to follow on Capitol Hill to celebrate the Senate victory. A Parade of Cherubs will take place on April 19, 2013, starting at the Lincoln Memorial at 11:00. It is being led by Dawn Williamson, President of CHERUBS and mother to Shane, a non-survivor, and Melissa Larrison, Virginia State Representative and mother to Hanna Larrison, also a non-survivor.
New York City, NY – CHERUBS NY State Representatives, Noel Williams, Mom to Aidan Williams who was born and passed away in 2006, and Tara Zoitos, Mom to Taylor Zoitos, a 10 year old CDH Survivor. On April 19, 2013, we will be hosting a Parade of Cherubs jointly with the Doctor's and Geneticist's with the DHREAMS CDH Research Study at Columbia Presbyterian. Families will be meeting at 1 o'clock in the Winter Garden of NY Children's Hospital where light refreshments will be served while hearing a presentation on CHERUBS and the amazing work being done to support families affected by CDH as well as their efforts to assist funding of CDH Research. The second presentation will be made by Dr. Wendy Chung, Principal Investigator and Dr. Julia Wynn, Genetic Counselor, and Principal Study Coordinator into the DHREAMS CDH Research Study, they will discuss findings they have made and let families know how they can participate in the study. At 3 o'clock we will lead families on a Parade of Cherubs, handing out brochures and raising awareness within the community.
Dallas, TX – The first ever Dallas Awareness Parade of Cherubs will be held on April 20, 2013 at Victory Park. Anyone who has been affected by CDH - family, friends or anyone else, who would like to help and join us in spreading awareness are invited to attend. Everyone is welcome! We will meet in front of the ABC television station WFAA located in Victory Park at 11am. It is also the home of the American Airlines Center. We will be walking around Victory Park with our banner, posters, and balloons. We will then have a balloon release in memory of all of our CHERUBS we have lost, our CHERUBS that continue to fight the battle, our future CHERUBS waiting to be born, and in honor of our CHERUBS that have fought a hard battle and made it home. The Parade is being organized by Texas Co-Rep Cassandra Carter, who is a 26 year old survivor.
Philadelphia, PA – CHERUBS is working with the Children’s Hospital of Philadelphia (CHOP) to celebrate International Day of Congenital Diaphragmatic Hernia Awareness on Friday, April 19th, 2013. Karla Holt, the Pennsylvania, New Jersey and Delaware Representative for CHERUBS is organizing the event. Participants will attend a program at the Abramson Research Building beginning at 9:00 am. After the program, participants will walk to the James G. Kaskey Memorial Garden at the University of Pennsylvania for a short ceremony. Everyone is invited to eat lunch together at a local restaurant immediately following the ceremony.
Gainesville, FL – On April 19, 2013, CHERUBS and Shands Hospital for Children at the University of Florida in Gainesville will be hosting the 2013 Gainesville Parade of Cherubs. This parade coincides with the 2013 International Day of Congenital Diaphragmatic Hernia Awareness. Participants will meet in the atrium of the UF & Shands north campus at noon. The parade route extends around the north campus of UF & Shands and down to the Shands Medical Plaza. There will be a short stop at Wilmot Gardens to remember all the CHERUBS who lost their battle with CDH. The parade will end back at the UF & Shands north campus atrium.
The UF Congenital Diaphragmatic Hernia Program will also be sponsoring a patient reunion at Tioga Town Center on April 20th, 2013, from 11am – 3pm. Information and RSVP’s can be found at https://ufandshands.org/events/congenital-diaphragmatic-hernia-cdh-patient-reunion.
Chicago, IL - CHERUBS is working with Ann & Robert H. Lurie Children's Hospital of Chicago to put on the Chicago Parade of Cherubs on April 19th. The Illinois Representative for CHERUBS, Neil Rubenstein, is organizing the Chicago Parade. Starting at 11:00 a.m., participants will take part in a balloon launch at Childerley Park in Wheeling to pay respect to all those CHERUBS lost. Then they will walk 2.5 miles through Wheeling and Buffalo Grove to help raise awareness of CDH. Close to 70 people (from four states) are expected to participate in this awareness & fundraising event.
Join us after the parade at Lou Malnati's in Buffalo Grove for lunch and help us Pack Potbelly's in Wheeling to raise additional money towards CDH research (from 3pm - 6 pm on April 19th as well). 50% of the money raised will stay local and be donated to Lurie Children's Hospital of Chicago.
Denver, CO - The Denver Parade of Cherubs takes place on April 19, 2013, at Sand Creek Park starting at 3:30 pm. The event will start with the reading of the proclamation issued by Governor Hickenlooper and will follow with recognition of the health care professionals in Colorado who lend so much to the conduct and advancement of medical treatment for this congenital defect. A moment of silence will be observed in memory of those CHERUBS who have been lost to CDH. Finally, participants will take part in bubble blowing in memory of our CHERUB Angels, in honor of our cherub Warriors, and in anticipation of those cherubs who will arrive soon. The event was organized by Nicolle Colvin and Jennifer Rodi - the Colorado State Representatives for CHERUBS.
Peoria, IL - The 2013 Peoria Parade of Cherubs will take place on Saturday, April 20th at 2:00 pm at the Glen Oak Park Shelter. This event, in coordination with The Children's Hospital of Illinois at St Francis Medical Center, will reunite our miracles, and their families, with their caregivers. We will gather in the park for pictures and a Parade for awareness, followed by a ceremony of remembrance with a special song and bubbles blown up to the CHERUBS in Heaven. Finally, we will take delight in watching our miracles play together in the park, have a cookie and a visit, and say see you next year.
Washington DC – Charity members will meet with members of the U.S. House of Representatives on April 18th with a reception to follow on Capitol Hill to celebrate the Senate victory. A Parade of Cherubs will take place on April 19, 2013, starting at the Lincoln Memorial at 11:00. It is being led by Dawn Williamson, President of CHERUBS and mother to Shane, a non-survivor, and Melissa Larrison, Virginia State Representative and mother to Hanna Larrison, also a non-survivor.
New York City, NY – CHERUBS NY State Representatives, Noel Williams, Mom to Aidan Williams who was born and passed away in 2006, and Tara Zoitos, Mom to Taylor Zoitos, a 10 year old CDH Survivor. On April 19, 2013, we will be hosting a Parade of Cherubs jointly with the Doctor's and Geneticist's with the DHREAMS CDH Research Study at Columbia Presbyterian. Families will be meeting at 1 o'clock in the Winter Garden of NY Children's Hospital where light refreshments will be served while hearing a presentation on CHERUBS and the amazing work being done to support families affected by CDH as well as their efforts to assist funding of CDH Research. The second presentation will be made by Dr. Wendy Chung, Principal Investigator and Dr. Julia Wynn, Genetic Counselor, and Principal Study Coordinator into the DHREAMS CDH Research Study, they will discuss findings they have made and let families know how they can participate in the study. At 3 o'clock we will lead families on a Parade of Cherubs, handing out brochures and raising awareness within the community.
Dallas, TX – The first ever Dallas Awareness Parade of Cherubs will be held on April 20, 2013 at Victory Park. Anyone who has been affected by CDH - family, friends or anyone else, who would like to help and join us in spreading awareness are invited to attend. Everyone is welcome! We will meet in front of the ABC television station WFAA located in Victory Park at 11am. It is also the home of the American Airlines Center. We will be walking around Victory Park with our banner, posters, and balloons. We will then have a balloon release in memory of all of our CHERUBS we have lost, our CHERUBS that continue to fight the battle, our future CHERUBS waiting to be born, and in honor of our CHERUBS that have fought a hard battle and made it home. The Parade is being organized by Texas Co-Rep Cassandra Carter, who is a 26 year old survivor.
Philadelphia, PA – CHERUBS is working with the Children’s Hospital of Philadelphia (CHOP) to celebrate International Day of Congenital Diaphragmatic Hernia Awareness on Friday, April 19th, 2013. Karla Holt, the Pennsylvania, New Jersey and Delaware Representative for CHERUBS is organizing the event. Participants will attend a program at the Abramson Research Building beginning at 9:00 am. After the program, participants will walk to the James G. Kaskey Memorial Garden at the University of Pennsylvania for a short ceremony. Everyone is invited to eat lunch together at a local restaurant immediately following the ceremony.
Gainesville, FL – On April 19, 2013, CHERUBS and Shands Hospital for Children at the University of Florida in Gainesville will be hosting the 2013 Gainesville Parade of Cherubs. This parade coincides with the 2013 International Day of Congenital Diaphragmatic Hernia Awareness. Participants will meet in the atrium of the UF & Shands north campus at noon. The parade route extends around the north campus of UF & Shands and down to the Shands Medical Plaza. There will be a short stop at Wilmot Gardens to remember all the CHERUBS who lost their battle with CDH. The parade will end back at the UF & Shands north campus atrium.
The UF Congenital Diaphragmatic Hernia Program will also be sponsoring a patient reunion at Tioga Town Center on April 20th, 2013, from 11am – 3pm. Information and RSVP’s can be found at https://ufandshands.org/events/congenital-diaphragmatic-hernia-cdh-patient-reunion.
Chicago, IL - CHERUBS is working with Ann & Robert H. Lurie Children's Hospital of Chicago to put on the Chicago Parade of Cherubs on April 19th. The Illinois Representative for CHERUBS, Neil Rubenstein, is organizing the Chicago Parade. Starting at 11:00 a.m., participants will take part in a balloon launch at Childerley Park in Wheeling to pay respect to all those CHERUBS lost. Then they will walk 2.5 miles through Wheeling and Buffalo Grove to help raise awareness of CDH. Close to 70 people (from four states) are expected to participate in this awareness & fundraising event.
Join us after the parade at Lou Malnati's in Buffalo Grove for lunch and help us Pack Potbelly's in Wheeling to raise additional money towards CDH research (from 3pm - 6 pm on April 19th as well). 50% of the money raised will stay local and be donated to Lurie Children's Hospital of Chicago.
Denver, CO - The Denver Parade of Cherubs takes place on April 19, 2013, at Sand Creek Park starting at 3:30 pm. The event will start with the reading of the proclamation issued by Governor Hickenlooper and will follow with recognition of the health care professionals in Colorado who lend so much to the conduct and advancement of medical treatment for this congenital defect. A moment of silence will be observed in memory of those CHERUBS who have been lost to CDH. Finally, participants will take part in bubble blowing in memory of our CHERUB Angels, in honor of our cherub Warriors, and in anticipation of those cherubs who will arrive soon. The event was organized by Nicolle Colvin and Jennifer Rodi - the Colorado State Representatives for CHERUBS.
Peoria, IL - The 2013 Peoria Parade of Cherubs will take place on Saturday, April 20th at 2:00 pm at the Glen Oak Park Shelter. This event, in coordination with The Children's Hospital of Illinois at St Francis Medical Center, will reunite our miracles, and their families, with their caregivers. We will gather in the park for pictures and a Parade for awareness, followed by a ceremony of remembrance with a special song and bubbles blown up to the CHERUBS in Heaven. Finally, we will take delight in watching our miracles play together in the park, have a cookie and a visit, and say see you next year.
Kristin Aigner is the Parade Coordinator, CDH Follow Up Clinic RN, NICU RN, and Sister to Christopher, a Cherub in Heaven. Kristin's Mother is also an NICU RN, retired, and was the first ECMO Coordinator for OSF. Kristin grew up knowing exactly where she belonged, with her brother's picture hanging outside her bedroom door, showing her the way. She is honored to care for these children, their families, and to help bring them together on this day.
Seattle, WA - The Seattle Parade of Cherubs takes place on April 19, 2013 and is being organized by CHERUBS Washington State Representative, Christina Stembler, whose son, Hunter Stembler, was born with CDH. Christina invites everyone that has been affected in any way by CDH to take part in the parade.
50% of all local sponsorships, t-shirt sales and donations will go towards CDH Research at Seattle Children's Hospital!
St Louis, MO - The St Louis Parade of Cherubs takes place on April 19, 2013 and is a joint project of CHERUBS and the St. Louis Fetal Care Institute. It will include a walk around the hospital grounds, a presentation, candle lighting, and lighted balloon release.
Portland, OR - Oregon & SW Washington members of CHERUBS will be holding Portland's 2nd "Parade of Cherubs" for the International CDH Awareness Daily Celebration in conjunction with several other cities in the USA & UK on Thursday, April 19th at Legacy Emanuel Hospital in Portland, OR. New this year is also a "CDH Information Fair" open to medical professionals & the general public to learn more about CDH & CHERUBS. The information fair will be from 11:00 am - 1:00 pm in Rooms 1075 & 1077 (just off the Lunchroom) and the parade will be 1:00 pm to 3:00 pm.
The local event is being coordinated by CHERUBS Oregon Co-Reps & Hospital Angels, grandmother Shelly Moore & mother Alicia Gilbert to CDH angel Jayden Gilbert who died in March of 2010 after a 23 day fight against CDH & complications, Andrea Martin whose 13 year old daughter Sarah is a CDH survivor and Jamie Rowan, mother to CDH angel Jacob Rowan, lost at 24 weeks gestation at 33 minutes old.
Phoenix, Arizona - The Phoenix Parade of Cherubs takes place on April 19, 2013 and is being organized by CHERUBS Arizona State Representatives, Stephanie Tolley (who is a CDH survivor), and Somer Ball (mother of CDH survivor Rayanne Ball). Stephanie and Somer invite everyone that has been affected in any way by CDH, to take part in the guest speakers and parade. Meet at St. Joseph’s Hospital 350 West Thomas Rd Phoenix AZ, at 3 pm on the 6th floor, Eldorado room. After we will be meeting at 300 E Indian School Rd Phoenix Arizona 85012 to march in a parade and blow bubbles (please feel free to bring your own bubbles) in Loving Memory of all CHERUBS lost and in celebration of CDH Warriors and the awareness that they share on a Daily basis.
Salt Lake City, UT – The Salt Lake City Parade of Cherubs takes place on April 19, 2013 and is being organized by CHERUBS Utah State Representative Josh Hensley and wife, Melanie Hensley, whose daughters, Evie and Ally, were born with and taken from them by CDH. The Hensleys invite everyone that has been affected in any way by CDH, to take part in the parade. We are meeting in downtown Salt Lake City on the southeast corner of South Temple and Main Street at 4:00 p.m. We will be walking to the Salt Lake City and County Building and releasing balloons in loving memory of all CHERUBS lost and in celebration of CDH Warriors and the awareness that they share on a daily basis.
Las Vegas, NV – Nevada will recognize CDH Awareness Day on April 19, 2013. In honor of the families touched by this devastating birth defect, an awareness event is being coordinated by CHERUBS Nevada State Representative, Patricia Houle, and a mother of a CDH survivor, Jill Gibson. Come show your support at the Las Vegas 51's home game at Cashman Field at 7:05 p.m.! Tickets are $10 and children under three are free. All proceeds will go towards supporting families of children born with CDH.
United Kingdom – UK CHERUBS Representative Clair Maher, along with two close family friends will be taking part in A Tandum Skydive at The Parachute Centre near Whitchurch in Shropshire UK. In the evening they are organizing for families & supporters across the UK to join us In Lighting up The UK Night in Memory & Celebration of all babies born with CDH. Their aim is to raise as much money as we can for CHERUBS& The Royal Manchester Children Hospital CDH Research fund.
Canada – the CN Tower in Toronto will be lit in blue, yellow , and pink on the evening of April 19th to raise Congenital Diaphragmatic Hernia Awareness.
Ireland – Dublin City Hall will be lit on the evening of April 19th to raise Congenital Diaphragmatic Hernia Awareness.
A Virtual Parade of Cherubs will include 100's of CDH families submitting stories, photos and video over social media. More information can be found at https://www.facebook.com/cdhsupport
Senate Resolution - http://www.govtrack.us/congress/bills/113/sres85
CHERUBS – http://www.cdhawarenessday.org/
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