Founders and Advisory Board

Who created CongenitalHeartDefects.com?
Why are we here?

The Co-Creators are Anna Jaworski and Sue Dove

Anna Jaworski is the mother of two boys, Joseph and Alexander. Joseph is a heart healthy boy who will turn 11 in August of 2002. Alexander, who will be eight years old in August 2002, was born with a complex congenital heart defect known as hypoplastic left heart syndrome (HLHS).

In order to understand Alexander's heart defect better, Anna has done extensive research about HLHS. She wrote a book called Hypoplastic Left Heart Syndrome: A Handbook for Parents to help others understand HLHS better. Anna also wrote My Brother Needs an Operation after she saw how difficult Alexander's surgeries were for Joseph.

Inspired by the stories of women that Anna met (in person and online), she decided to put together a book of essays by women affected by CHDs. The result was The Heart of a Mother -- a book of over 60 essays from women around the world. In 2009 Anna and her father finished compiling The Heart of a Father -- a book of essays by men affected by CHDs.

Anna wanted to create this new website in order to provide the CHD community with even more information. When Alexander's heart defect was identified over seven years ago, there was very little information available for parents. It has been Anna's mission to create new resources and to make information available to the CHD community. By joining forces with Sue Dove, Anna felt that they would be able to create the most comprehensive site about CHDs on the Internet.

Sue Dove has two children. Her first child, Scott, was born in December 1990 with a single ventricle. Her daughter Sarah was born heart healthy in January 1995.

After having gone through two open-heart procedures with Scott, Sue finally found some support available on the Internet. Having "been there, done that" and since Scott continues to do so well after his third open heart surgery, Sue has decided to help others who are going through the same things she's been through. In order to do this, Sue has worked hard to make information available on the Internet to parents of heart children and to encourage networking among the CHD community.

Sue was given the opportunity to provide CHD information to the internet community by agreeing to be the webmaster for the Baby Hearts Press website. When Anna came up with the idea for the new Congenital Heart Defects site, Sue jumped at the chance to create the best site on the internet for CHD-related information and support!

Sue's creativity and her command of HTML have helped to develop a site where everyone is welcome and where a wealth of information is available in a user-friendly format.

The mission of CongenitalHeartDefects.com is to host the most comprehensive website on the Internet for supplemental information for the world-wide congenital heart defect (CHD) community.
Here are some of our goals:

1. to help members of the CHD community make more informed decisions regarding care of CHDs by providing information regarding CHDs and links to other sites and educational articles

2. to encourage networking within the CHD community via a contact page of CHD community members, our Message Board and links to other pertinent websites

3. to provide a calendar of events to help spread awareness of conferences and events for families and professionals

4. to heighten awareness of CHDs in the community at-large

5. to support other CHD support groups and organizations by providing links to their websites and publishing their mission statements on our Resources page

We have asked a select group of people to be part of our Advisory Board -- a think tank of some of the brightest and most creative minds in the CHD community. By working together, we believe we can host a site that will be of benefit to all. By educating ourselves, networking with one another to be stronger advocates for our children and the CHD community in general, and by forming a coalition with other CHD organizations, we hope to provide a much-needed service to the CHD community.

Our Advisory Board consists of:

	Vicki Baerg is mom to three energetic boys. Her first child, Christopher, was born with Tetralogy of Fallot. She also has a set of identical boys, Andrew and Michael, who are heart healthy. She volunteers for the Children's Miracle Network Telethon every year, and is active with her local support group, as a member of the board and most importantly as a Resource Parent, helping other families with children who have a heart defect.
	Helen Bishop has two daughters: Haley, 13, born with truncus arteriosus, and Emily, 9 and heart healthy. She has been a teacher for 22 years, and married to Roy, a fellow teacher, for almost 19 years. When living in Sacramento, CA, Helen was president of "Families with Heart" and facilitated a parent chat on AOL every Friday. Now back home in Vermont, Helen is a member of Vermont's "Heart to Heart" support group and continues to network online with CHD parents and friends.
Jacqueline Blyth, Ph.D.	Jacqueline Blyth is a Chartered Clinical and Health Psychologist working in the Departments of Clinical Psychology and Cardiology at the Birmingham Children's Hospital, UK. For her doctoral thesis she conducted research into the neuropsychological and neurological functioning of children with HLHS following the Fontan procedure. Ms. Blyth is particularly interested in univentricular heart disease. She has recently contributed a chapter to a book due to be published this year detailing all aspects of HLHS and its management. To read a summary of the research she worked on, click Here . .
	Angie and Dan Brooks founded the Zachary Brooks CHD Endowment after Zachary passed away following heart surgery. Angela and Dan are the proud parents of four children, Alexis (HH) born 2/12/93, Nicholas (HH) born 10/25/95, Zachary (Complete AV Canal Defect and CoA) 6/2/99-11/30/99, and Noah Zachary (named after his guardian angel) ASD born 8/29/01.
	Robert Campbell, M.D. is the Chief Medical Officer of Sibley Heart Center and the Director of Sibley Heart Center Cardiology. The Sibley Heart Center is active with parent support groups, Kids at Heart and the Annual Parent Conference.
	Diane C. Clapp is an adult who was born with the heart defect tricuspid atresia. In October of 1997 she started a mutual support chat on America Online for adults with heart defects. This gives them a place to discuss or vent their frustration about living with a CHD.
Alysanne Crymes	Alysanne Crymes is a reference librarian of 16 years who has a special interest in medical reference. She serves on the Family Advisory Board at Arkansas Children's Hospital. Most importantly, she is mom to Brendan and Lauren. Brendan has congenital heart block with a pacemaker and a repaired ASD. Lauren is heart healthy.
	Sara Farina , from Bend, Oregon, is the homeschooling Mom of Janey (HH; 7) and Annabelle (HH; 4) and the aunt to a CHD angel, Spencer, who passed away in 2000 due to HLHS. Sara has become a strong advocate of CHD Awareness and is currently working with others on the CHD Awareness Quilt Project.
	Debbie Gilmore is the mother to Matthew (passed away in September 1997 of ToF) and Brandon (4; HH). Debbie writes about her experiences as a mother and was featured in The Heart of a Mother , Chicken Soup for the Mother's Soul II and Parenting With Spirit. She currently lives in Kaiserslautern, Germany with her husband Gene (who is contributing to The Heart of a Father).
Paul Grossfeld, M.D.	Paul Grossfeld, M.D. is a Clinical Instructor in the Pediatric Cardiology department at the University of California, San Diego School of Medicine. He is currently doing research on genetics. He enjoys helping those in the CHD community understand heart defects and what causes them. .
	Jane Hunt is the mother of three boys: Justis (13; HH), Lucas (9; HH) and Marcus (7; single ventricle; post-fenestrated Fontan on 1/16/96 at Childen's Hospital of Austin, Texas). She was featured in The Heart of a Mother for her role as an advocate for children with congenital heart defects. Jane and her family currently reside in San Diego, California.
	Frank Jaworski, CRNA is a certified registered nurse anesthetist and the father of Joey (10; HH) and Alex (7; HLHS). Frank is married to Anna Jaworski. He illustrated Hypoplastic Left Heart Syndrome: A Handbook for Parents . Frank also drew the heart diagrams in The Heart of a Mother . Frank's thesis, Anesthetic Management of Pediatric Patients with Hypoplastic Left Heart Syndrome for Non-Cardiac Surgery is also on this site.
Ann Marie Karl	Ann Marie M. Karl is an attorney in Florida and New York. She works with international organizations linked to the United Nations programs, and with participatory democracy, governance, citizenship and Rule of Law projects. Ann Marie worked with Anna Jaworski in Florida on business and strategic planning, non-profit organization capacity building, publishing, and importantly, citizen leadership and parental advocacy for CHD.
Jim Larson	Jim Larson is an ACHDer. He was born 51 years ago with ToF. He had a Blaylock Shunt in 1953, and open-heart surgeries in 1962 and 2000. He is, in his words, "reasonably healthy" and he works as a forester in Minnesota.
Jack Macdonald	Jack Macdonald is a mechanical engineer with a strong background in computer programming. Seeking to help his friends suffering from CHD, he is working to make this website more user friendly by taking the newcomer's point of view in acquiring help and information. Jack has made many recommendations on how to improve the site. He hopes that it will help the user get what he/she requires.
	J.D. McCain and his wife Nancy are the grandparents of Samantha McCain, born with HLHS on 3-1-1997. J.D. is on the Advisory Board of the CHD Awareness Quilt Project . He maintains the data base for all the quilt blocks as well as makes the blocks and quilts.
	Here is Steve McCain sitting with his son Bradley (HH) and daughter Samantha (HLHS) while camping at one of their favorite locations just north of San Fransisco. He and his wife Pam are very grateful for all the support Anna and Frank have provided over the past 5 years. You can see from this photo that Samantha is a very happy and thriving child.
Sara and Ari Meisel
Michelle Rintamaki	Michelle Rintamaki is mom to John, a 15 year old with ToF and the founder of Kids With Heart National Association of Children's Heart Disorders, Inc. Michelle has a B.A. in music education. Her mission has been to provide educational resources for parents of children with congenital heart defects both online and offline. Through Kids with Heart Michelle also does parent matching.
Rita Scoggins	Rita Scoggins is the mother of three grown children: Bobby (29; HH), Christopher (25; HH) and Victoria (college freshman, 19, repaired coarctation, pa band, tricuspid atresia, asd, vsd, 13 years post-Fontan, 6 stents,TCH). Rita was featured in The Heart of a Mother where she wrote an essay for the Rites of Passage chapter. Rita's husband Robert is on the Harlingen AHA Board. Rita supports the AHA by writing and promoting CHD awareness. She teaches high school at Harlingen High School South.
	Sheri Turner , Founder of the Massachusetts Heart Coalition and member of our advisory board feels very strongly about the power of collaboration and partnership. She and her husband Stephen lost their first child, Thomas William Turner to Hypoplastic Left Heart Syndrome and Pulmonary Vein Stenosis in November of 1997. Since Thomas' death Sheri has used her grief to educate others and to advocate for those who are coping with CHD.
Desiree Vaught	Desiree Vaught is the proud mother of three children: Eric Cody (8; HH), Jaclynn Nicole, (6; HH) and Logan Gene (HLHS) 12/7/98 ~ 12/9/98, and wife to Brandon. After being diagnosed with HLHS during a prenatal ultrasound, the Vaughts became involved in the CHD community. Realizing a great need, Desiree has been involved in promoting CHD awareness, supporting other heart parents (those who are dealing with the difficult journey of grief and those who have living children with CHDs). She has positively focused her grief on reaching out to others and sharing her experiences with the hope of helping others. Desiree is the CHD Awareness Quilt Project Historian.
	Dodie Weisbrod is the mother of three children: Amanda (6, HH), Nicholas (12/7/96 - 2/7/97, Truncus Arteriosis and TAPVR) and Johnathan (3, HH). Dodie founded Toys For Nicholas, an organization providing infant toys and support items, on what would have been Nicholas' first birthday. Dodie is a strong advocate for CHD awareness and the need for research.