MEET OUR BOARD - Dawn Torrence Williamson, President & Founder

Dawn Torrence Williamson Dawn is the mom of Shane Torrence (1/28/93-9/11/99). Shane was born with left-sided CDH, ASD, hypospadius, pulmonary sequestration, descended testes, and multiple other birth defects. Shane spent his first 10 months in the PICU at Duke University Medical Center and many more hospitalizations at the University of North Carolina at Chapel Hill. He had a trach for 3 years while he was on a ventilator for 2 years and oxygen for 2 and a half years. He also had a Mic-Key feeding tube, hearing aids, oral aversions, developmental delays and textile aversions. He suffered multiple complications including 6 CDH repairs, pulmonary hypertension, blindness for a year, hearing impairment, Cerebral Palsy, multiple blood infections and pneumonia and was lost to a very rare case of gastropleural fistula at age 6 and a half. Dawn is also the founder and President of CHERUBS.  Having volunteered for 16 years until she quit her job as a web designer and graphic artist to become CHERUBS first full-time employee in 2011.  Dawn works out of CHERUBS international headquarters in Wake Forest, North Carolina with 3 office volunteers; Shanon, Holly and Vicki. She is married to Craig, and they have 2 boys; 17-yr-old twins Braden and Garret. Going back to school to learn more about how to help our charity, she has a 4.0 in college while taking such courses as Biology, Anatomy, Medical Terminology, Business, Web Development, Public Speaking and more. She also is very active in her local community, belonging to several business and civic organizations as well as her local church.

MEET OUR BOARD - Kelly Green-Krist, CPA - Treasurer

Kelly Green-Krist, CPA - Treasurer A graduate from Saint John’s University with a Bachelor’s degree in Accounting and a Master’s degree in Taxation, Kelly is a Certified Public Accountant and a Chartered Global Management Accountant with over 20 years of business experience, in roles such as Corporate Controller, Accounting Manager and Senior Accountant. She has broad experience in financial and SEC reporting, general accounting, tax compliance and planning, budgeting and forecasting, treasury management, planning and analysis, audit functions and process improvement in industries such as healthcare, software, pharmaceutical, manufacturing and logistics. She is a member of the North Carolina Association of Certified Public Accountants and the American Institute of Certified Public Accountants.   Kelly is married and has 2 boys, ages 14 and 5. She enjoys cooking, reading, action movies and has recently started gardening.

Portland, OR Parade of Cherubs on April 19th

 Join us for April 19th, the International Day of Congenital Diaphragmatic Hernia Awareness!!!! 


Portland, Oregon Parade Parade of Cherubs on April 19th for CDH Awareness

•     On Facebook - https://www.facebook.com/events/557033724326265/
•     Register on Eventbrite - http://cdhawarenessday-2013portland.eventbrite.com/
•     Set up your own Team Member page on Firstgiving - https://www.firstgiving.com/10125/cdhawarenessday2013
•     50% of money raised will be donated to Legacy Emanuel Hospital for CDH Research
•     Contact Shelly or Andrea  with any questions about this event at oregon@cherubs-cdh.org
•  

 

MEET OUR VOLUNTEERS - Melissa Larrison

Melissa Larrison My name is Melissa Larrison. I am a mom to 3 beautiful children. Jada who is nine, Kaia who is eight, and Hanna Rae Rose who is our CDH angel. I was diagnosed at nineteen weeks and went to OKC to deliver as it was close to family. Hanna’s defect was relatively small and easy to fix. Unfortunately her little body couldn’t get over other complications with her care and she passed away after twenty one days of fighting. I joined Cherubs in October of 2008 and the amount of support I have received is immeasurable. Cherubs has become part of my family and I am forever grateful for them. I now hold a board position on the parent board. I am the Fundraising Coordinator and the Virginia state representative. Please feel free to contact me for any of your Cherubs needs.

Seattle, WA Parade of Cherubs on April 19th

 Join us for April 19th, the International Day of Congenital Diaphragmatic Hernia Awareness!!!! 

Seattle, Wa Parade Parade of Cherubs on April 19th for CDH Awareness

•     On Facebook - https://www.facebook.com/events/245684502229317/
•      Register on Eventbrite - http://cdhawarenessday-2013seattle.eventbrite.com/
•      Set up your own Team Member page on Firstgiving - https://www.firstgiving.com/10125/cdhawarenessday2013
•      50% of money raised will be donated to Seattle Children's Hospital for CDH Research
•     Contact Christina with any questions about this event at washington@cherubs-cdh.org
  

MEET OUR VOLUNTEERS - Marie Marchesseault

Marie Marchesseault Marie Marchesseault is the mother of Anna, who was diagnosed with right-sided CDH in-utero after an ultrasound was done and more tests were performed, just to make sure everything was okay.  After the diagnosis, Marie and her husband Bob were given the option to terminate the pregnancy by the hospital, but they chose not to, due to their personal faith.  Anna was born by a scheduled c-section on November 29, 2001 and had a successful diaphragm repair at 5 days.  She went on ECMO for 4 weeks and was in the NICU for a total of two months until she was discharged.  Anna was an unusually happy baby in the NICU due to the family support and wonderful care of the MGH staff.  Although she did not have any other major complications, she was in and out of the hospital about once per year for about 6 years for respiratory related issues.  She was back in the hospital two times in 2012 but is generally an overall healthy child.   Marie’s husband Bob, their son, Benjamin, born in 1998, and their vizsla, Sammi, have been an integral part of managing Anna’s care and well-being.  Marie has a BSEE from Duke University and they are members of First Baptist Church in Reading, MA.  Because of the amazing support of her employer, she was able to take maternity leave when Anna was born and worked part-time for many years.  She currently works full-time in the telecommunications industry and is the CHERUBS co-State Representative of MA.

MEET OUR VOLUNTEERS - Trish Collins

Trish Collins Teresa Collins (Trish), Co-representative, Florida, has been a member of CHERUBS since 2008. Her daughter Rebecca Dawn was born October 7, 2005 diagnosed at birth with left-sided CDH. Rebecca was placed on ECHMO soon after birth and remained on it for 10 days. She then had her hernia repair surgery, 5 days after that on October 25, 2005 she lost her battle and passed away. Teresa now has a son, Ashton Fenway born in 2007. Teresa has an Associates of Science degree in Medical Billing and is an active member of CHERUBS and Thoroughbred Horse Rescue.

S.Res. 85: A resolution designating April 2013 as “National Congenital Diaphragmatic Hernia Awareness Month”.

On March 20, 2013 Senator Jeff Sessions (R-AL), along with Co-Sponsor Senator Ben Cardin (D-MD) introduced  S.Res. 85: A resolution designating April 2013 as “National Congenital Diaphragmatic Hernia Awareness Month”.

On March 20, 2013 it was passed.

The United States Senate has officially designated April 2013 as “National Congenital Diaphragmatic Hernia Awareness Month”.

http://www.govtrack.us/congress/bills/113/sres85

This is an incredible victory for our cause in the battle against CDH and today, we celebrate!   

This resolution not only asks for awareness for an entire month but for research as well.   A press release and full text will be posted soon.

Even as we celebrate, the war is not yet over.  We are now rallying the troops to introduce and pass a resolution in the United States House of Representatives as well for CDH Awareness and also for Research.  

We also continue to gather proclamations from cities and states for more local awareness.  

The Parades of Cherubs across the country will now turn into celebrations also.

The Washington DC Parade of Cherubs has now changed focus from the Senate to the House as we march on Capitol Hill.

We ask our members and supporters to continue to push to raise more CDH Awareness, to join in and celebrate with us on April 19th by marching in a Parade of Cherubs, joining an event or participating in the Virtual Parade of Cherubs on-line.  

http://www.cdhawarenessday.org

This achievement has been many, many years in the making but it could not have been done without the support of our members, other CDH charities, all those who signed the petitions and all those who never gave up.   Our deepest, sincerest gratitude goes out Senator Sessions and his family for without their cherub, Jim Beau, and their amazing support none of this would be possible.

 

Denver, CO Parade of Cherubs on April 19

 Join us for April 19th, the International Day of Congenital Diaphragmatic Hernia Awareness!!!! 

Denver, Colorado Parade Parade of Cherubs on April 19th for CDH Awareness

•     On Facebook - https://www.facebook.com/events/190447231096098/ 
•     Register on Eventbrite - http://cdhawarenessday-2013denver.eventbrite.com/ 
•     Set up your own Team Member page on Firstgiving - https://www.firstgiving.com/10125/cdhawarenessday2013 
•     50% of money raised will be donated to Denver Children's Hospital for CDH Research
•     Contact Nicolle or Jennifer with any questions about this event at colorado@cherubs-cdh.org

 

 

 

MEET OUR BOARD - Lauren Campbell, Esq - Secretary

Lauren Campbell, Esq - Secretary Lauren grew up in Greensboro and moved to the Raleigh area when she was accepted as a member of the inaugural class of Campbell Law’s satellite campus in downtown Raleigh. She is proud to be a member of the team at The DiLeone Law Group. Lauren graduated with honors from the University of North Carolina Wilmington in 2007 with degrees in Business Management and Theatre Performance. In 2009, she enrolled as a student at the Norma Adrian Wiggins School of Law at Campbell University. She gained practical experience through working at a firm in Wilmington, North Carolina and alongside the general counsel of a large public corporation. She began working for the DiLeone Law Group the summer prior to her third year of law school after meeting Ralph while he was serving as an adjunct professor in several of her classes at Campbell Law. She completed her law degree from the Norman Adrian Wiggins School of Law at Campbell University in 2012 and passed the North Carolina State Bar Examination in July of 2012. In her free time, she enjoys spending time with her family, supporting the arts and running. <>Lauren has a Law Degree from Norman Adrian Wiggins School of Law at Campbell University and a Bachelor’s Degree from the University of North Carolina Wilmington. Lauren is a member of the North Carolina State Bar Association. She also serves on the recruitment task force for the Young Professionals Network through the Raleigh Chamber of Commerce and on the Board of Directors for CHERUBS - the Association of Congenital Diaphragmatic Hernia Research, Awareness and Support, a nonprofit organization which raises awareness, promotes research, and provides support for children and families of children who are born with Congenital Diaphragmatic Hernia. Lauren concentrates her practice in the areas of business and corporate law, employment law, incorporations, transactions, contracts, and the preparation of other legal documents.

Phoenix Parade of Cherubs on April 19th

 Join us for April 19th, the International Day of Congenital Diaphragmatic Hernia Awareness!!!! 

Phoenix, Arizona Parade Parade of Cherubs on April 19th for CDH Awareness

•     On Facebook - https://www.facebook.com/events/252034254927636/ 
•     Register on Eventbrite - http://cdhawarenessday-2013phoenix.eventbrite.com/
•      Set up your own Team Member page on Firstgiving - https://www.firstgiving.com/10125/cdhawarenessday2013
•      50% of money raised will be donated to Sunrise Hospital for CDH Research
  
•     Contact Somer or Stephanie with any questions about this event at arizona@cherubs-cdh.org
  

MEET OUR VOLUNTEERS - Andrea Martin

Andrea Martin My name is Andrea Martin and I am the mom to Sarah, born in 1999 with a LCDH. She was diagnosed in-utero at about 25 weeks. She was given a 25% chance of survival. Sarah was born in Portland and was quickly put on ECMO after her first repair. She did remarkably well and was in the NICU for about 2 months. She had a second hernia repair done at 10 months old. Sarah had a lot of complications from a brain bleed while on ECMO and has had years of ongoing issues resulting from CDH. She had rods fused to her spine to correct her scoliosis at 8 years old. Sarah is currently almost 14 years old and overall is a pretty typical teenager. She does struggle with her lung function but is a strong willed girl who does not let anything get in her way! I have been a member of CHERUBS for almost 13 years or so. I am a single mom whose first priority is my daughter. I am a child and family counselor and have a Master's in Counseling. Besides my CHERUB I also have a little dog who I spoil as if he was a real baby!I enjoy scrap booking, reading, watching Friends, shopping and decorating.

Salt Lake City, UT Parade of Cherubs on April 19th

Join us for April 19th, the International Day of Congenital Diaphragmatic Hernia Awareness!!!! 

Salt Lake City, UT Parade Parade of Cherubs on April 19th for CDH Awareness

•     On Facebook - http://www.facebook.com/events/118290918343460/
•     Register on Eventbrite - http://cdhawarenessday-2013slc.eventbrite.com/
•     Set up your own Team Member page on Firstgiving - https://www.firstgiving.com/10125/cdhawarenessday2013
•     50% of money raised will be donated to Primary Children's Hospital for CDH Research
•     Contact Josh with any questions about this event at utah@cherubs-cdh.org
  

MEET OUR VOLUNTEERS - Chris Weaver

Chris Weaver I am a mother of 4, 1 angel born sleeping, 2 girls and one boy.  I am also a grandmother of 3, 2 grandsons and 1 granddaughter. Born and raised in Boston suburb and moved to West Michigan in 2007.  I have two grandchildren with rare diagnosis of genetic disorders.  Matteo who is 3 1/2 was diagnosed at birth with hirschsprungs disease, which affects the colon.  He had a repair surgery at 3 weeks old.  Nevaeh, my granddaughter, who is the reason I became a member of CHERUBS in 2009, was diagnosed at 17 weeks gestation with LCDH.  I count my blessings each day as I have been told that it is very rare to have 2 different genetic diseases in the same family as we have.  We are lucky that both children have had corrective surgery and at this time doing well.

Peoria, IL Parade of Cherubs on April 19th

Join us for April 19th, the International Day of Congenital Diaphragmatic Hernia Awareness!!!! 

Peoria, IL Parade of Cherubs on April 19th for CDH Awareness

    On Facebook - https://www.facebook.com/events/562260840470364/
    Register on Eventbrite - http://cdhawarenessday-2013peoria.eventbrite.com/
    Set up your own Team Member page on Firstgiving - https://www.firstgiving.com/10125/cdhawarenessday2013
    50% of money raised will be donated to Children's Hospital of Illinois for CDH Research
    Contact Kristin with any questions about this event

Las Vegas 51's Baseball Night for CDH Awareness on April 19th

Join us for April 19th, the International Day of Congenital Diaphragmatic Hernia Awareness!!!! 

Las Vegas 51's Baseball Night for CDH Awareness

    April 19, 2013
    On Facebook - https://www.facebook.com/events/417568614987091/
    Register on Eventbrite - http://cdhawarenessday-2013lasvegas.eventbrite.com/
    Set up your own Team Member page on Firstgiving - https://www.firstgiving.com/10125/cdhawarenessday2013
    Purchase game tickets - http://lasvegas.51s.milb.com/index.jsp?sid=t400
    Contact Patricia & Jill with any questions about this event at nevada@cherubs-cdh.org

 

MEET OUR VOLUNTEERS - Shelly Moore

Shelly Moore

Shelly is mother to 3 adult children & 3 grandchildren, the youngest being her Cherub angel grandson Jayden Gilbert who lost his battle to CDH & kidney failure due to pulmonary hypertension complications at 23 days old on March 14, 2010. She is currently serving as as a CHERUBS Co-Representative for Oregon as well as sharing CHERUBS Hospital Angel duties with her daughter Alicia Gilbert, mother to Jayden. Shelly & Alicia came to CHERUBS just before Jayden was born, and even through the loss of their angel have been an active part of contests and awareness campaigns over the past two years for CHERUBS and have extended support to fellow CDH families all over the globe. She was also co-organizer for the “Portland Parade of Cherubs” on April 19, 2012.

Shelly has a background in computers and has worked primarily as a Windows technical support specialist in the home user market for over 10 years with additional years in customer service after leaving several years employment in the health care industry. She also served as a past president of the former Oregon Chapter of the National Marfan Foundation (NMF) for 7 years & currently supports the NMF as a telephone contact. She & her husband have been married for almost 19 years and they are avid Oregon Ducks & Portland Trailblazers fans.

St Louis Parade of Cherubs on April 19th

Join us for April 19th, the International Day of Congenital Diaphragmatic Hernia Awareness!!!!

St Louis Parade

•     Parade on April 20th
•     On Facebook - https://www.facebook.com/events/342181932557062/
•     Register on Eventbrite - http://cdhawarenessday-2013stlouis.eventbrite.com/
•     Set up your own Team Member page on Firstgiving - https://www.firstgiving.com/10125/cdhawarenessday2013
•     50% of money raised will be donated to the St Louis Fetal Care InstitituTe for CDH Research

Gainesville Parade of Cherubs for April 19th

 Join us for April 19th, the International Day of Congenital Diaphragmatic Hernia Awareness!!!!

Gainesville, FL Parade

• On Facebook - https://www.facebook.com/events/129625617198348/
• Register on Eventbrite - http://cdhawarenessday-2013shands.eventbrite.com/
• Set up your own Team Member page on Firstgiving - https://www.firstgiving.com/10125/cdhawarenessday2013
• CDH reunion registration at https://ufandshands.org/events/congenital-diaphragmatic-hernia-cdh-patient-reunion 
• 50% of money raised will be donated to the Shands for Children Hospital for CDH Research
• Contact Vanessa, Trish or Rhonda with any questions about this event at florida@cherubs-cdh.org

MEET OUR VOLUNTEERS - Melanie Parsons

Melanie Parsons Hi I’d like to introduce myself, I’m Melanie and I’m mummy to a cherub angel Jak. He was born on 25th July 2001 at St. Mary’s hospital Manchester. He spent his 6 months in the hospital. He lost his hard fight on 24th January 2002. I am also mummy to Ben who was born two years and two days after Jak. And after a worrying pregnancy ( i worried not the doctors), all was find with Ben. I am 40 years young and live in Tyldesley in Manchester. I work in a cafe which is called Little Jak's Pantry in memory of our son Jak. I love reading shopping and spending time with Ben and Paul (my partner). Ben loves his martial arts he is nearly a black belt. He also loves playing computer games and riding his bike. I hope along with Clair, I can support the CHERUBS family and do my best to raise awareness to CDH

Gainesville Parade of Cherubs on April 19th

 Join us for April 19th, the International Day of Congenital Diaphragmatic Hernia Awareness!!!!

Gainesville, FL Parade

• On Facebook - https://www.facebook.com/events/129625617198348/
• Register on Eventbrite - http://cdhawarenessday-2013shands.eventbrite.com/
• Set up your own Team Member page on Firstgiving - https://www.firstgiving.com/10125/cdhawarenessday2013
• CDH reunion registration at https://ufandshands.org/events/congenital-diaphragmatic-hernia-cdh-patient-reunion 
• 50% of money raised will be donated to the Shands for Children Hospital for CDH Research
• Contact Vanessa, Trish or Rhonda with any questions about this event at florida@cherubs-cdh.org

MEET OUR VOLUNTEERS - Neil Rubenstein

Neil Rubenstein Neil Rubenstein has been married since 2003 to his wife, Amy. His CDH survivor (Aidan) was born in June 2010 after being diagnosed at 37 weeks.  Aidan had surgery to repair his hernia when he was 4 days old.  His surgeon discovered at that time that Aidan had no diaphragm at all, all his organs were in his chest (except for his liver), his heart had been pushed to the left side by his stomach, and he had two spleens (apparently not uncommon).  Even with all this, Aidan did not need ECMO and was only in the NICU for 29 days.  Aidan had a follow-up procedure at 13 months old to close up an abdominal hernia that his surgeon created to give his organs room to grow once she moved them all back to their proper location in his abdomen.      While Amy and Neil were still dating, they started Creative Celebrations, a children party planning and entertainment company.  Neil has over 15 years experience in Integrated Marketing Communications.

MEET OUR VOLUNTEERS - Stephanie Tolley

Stephanie Tolley My name is Stephanie Tolley. I myself am a CHERUBS survivor. I was born in 1989 with LCDH. My family found out in an ultra sound. At birth (in a California doctors office) and the doctors told my family there is nothing they could do, so to say their goodbyes. My family called the hospital I was life flighted out and in surgery within the hour. After 6 months in the hospital I was released and have very little trouble from CDH as an adult. I found out about the CHERUBS foundation through my aunt and thought it was an amazing cause and asked to be a part of it, and I got the honor of being your Arizona Representative. To let you get to know me I am a mother of one. Bryson Steele is my two year old son. Right now I am a student for hair and I own my own business as a makeup artist. I really look forward to getting to know each and every one of you and hope you want to help out!!

Dallas Parade of Cherubs on April 19th

 Join us for April 19th, the International Day of Congenital Diaphragmatic Hernia Awareness!!!!

Dallas Parade

    Parade on April 20th
    On Facebook - https://www.facebook.com/events/553054394719908/
    Register on Eventbrite - http://cdhawarenessday-2013dallas.eventbrite.com/
    Set up your own Team Member page on Firstgiving - https://www.firstgiving.com/10125/cdhawarenessday2013
    50% of money raised will be donated to the Texas Fetal Center at Children's Memorial Hospital for CDH Research
    Contact Cassandra with any questions about this event at texas@cherubs-cdh.org

Boston Parade of Cherubs on April 19th!

 Join us for April 19th, the International Day of Congenital Diaphragmatic Hernia Awareness!!!!

Boston Parade

    On Facebook - https://www.facebook.com/events/429436317126141/
    Register on Eventbrite - http://cdhawarenessday-2013boston.eventbrite.com/
    Set up your own Team Member page on Firstgiving - https://www.firstgiving.com/10125/cdhawarenessday2013
    50% of money raised will be donated to the CDH Genetic Study Program at Mass General
    Contact Tracy & Marie with any questions about this event at massachusetts@cherubs-cdh.org

MEET OUR VOLUNTEERS - Jennifer Rodi

Jennifer Rodi Jennifer is the mother of Joseph, born August 31, 2011, at 40 weeks and 42 minutes. He was born with a left-sided CDH, diagnosed at 20 weeks gestation. He spent 155 days (5 months) in the NICU at Children’s Hospital Colorado, in Aurora, Colorado. Joseph had his hernia repair at 3 days of life and was on an oscillating ventilator and eventually weaned to a respirator over several weeks. On October 20th a cardiac catheterization revealed that Joseph has a mild coarctation. On November 1 Joseph had his second surgery – a Nissen Fundoplication and G-Tube to address his severe reflux. On December 24, he had what will hopefully be his last surgery, an aortic pexy to address his severe tracheal malacia. Jennifer is a co-representative for the state of Colorado. She is happily married to her best friend, Al.  Jennifer is a senior air safety investigator for the National Transportation Safety Board. She has a BS in Aviation Science, two MS degrees in Aviation Science with specializations in Systems Safety and Human Factors, and is a PhD candidate in Industrial and Organizational Psychology. Jennifer and Al enjoy restoring their home, racing stock cars, operating their vintage motor cars, and spending every waking moment with their miracle Cherub Joseph.

Chicago Parade of Cherubs on April 19th!

Join us for April 19th, the International Day of Congenital Diaphragmatic Hernia Awareness!!!! 

Chicago, IL Parade

    On Facebook - https://www.facebook.com/events/530087357016093/
    Register on Eventbrite - http://cdhawarenessday-2013chicago.eventbrite.com/
    Set up your own Team Member page on Firstgiving - https://www.firstgiving.com/10125/cdhawarenessday2013
    50% of money raised will be donated to Lurie Children's Hospital of Chicago (formerly Children's Memorial) for CDH Research
    Contact Neil Rubenstein with any questions about this event at illinois@cherubs-cdh.org