Founders and Advisory Board

Congenital Heart Defect Resources

If you know of other resources that should be listed, please Email me at: sdove1@alltel.net Thanks!

Click on one of the catagories below to go directly to that section.

Medical Information

• - for Professionals
• - for Parents and Others Interested in CHD Information

Suppport Groups

• - for Adults with Congenital Heart Defects
• - for All Ages with CHDs
• - Bereavement Support Groups

CHD Foundations

Other CHD related sites

Listservs and Webrings

Camps

Transplant Information

Medical Transport - Air Ambulance, etc.

Care Notebook
The Care Notebook and Care Organizer are tools for families who have children with special health care needs. Families use Care Notebooks to keep track of important information about their child's health and care. This makes it easier to find and share key information with their child's care team.

For Anesthesiologists and CRNAs

Anesthesiology Online
Anesthesiologists and Clinical Registered Nurse Anesthetists would benefit from knowing about how they can get CME credit online at this site.

Anesthetic Management of Pediatric Patients with Hypoplastic Left Heart Syndrome for Non-Cardiac Surgery
by Frank A. Jaworski, BSN, RN

Continuing Education Information for Nurses:

The American Association of Critical Care Nurses
This organization provides many articles and CEUs online.

Cardiac Development - Nursing CEU
This animated lesson helps one understand what some common cardiac malformations look like.

Pediatric and Neonatal Resources
for only $8/contact hour, nurses can earn CEUs in a variety of areas. There are also links to other nursing related sites.

Continuing Education Information for Doctors:

Doctor's Guide - Congress Resource Centre

Ed Credits Continuing Education Credits for medical professionals.
Ed Credits is designed to help professionals with their busy and demanding schedules. We offer self-paced, high quality on-line courses which can be taken from any on-line computer.

Fetal Echocardiography
This two-day program provides a comprehensive introduction to the science and practice of fetal echocardiography.

Healthstream
HealthStream, Inc., based in Nashville, TN, is the leading provider of e-learning solutions to the healthcare industry.

NASPE 2001 - 22nd Annual Scientific Sessions
Medscape Conference Coverage, based on selected sessions at the: NASPE 2001 - 22nd Annual Scientific Sessions (up to 4.5 hours of AMA PRA category 1 credit) CME -- Valid for credit through June 12, 2002

General CHD Information For All Medical Professionals:

Echo UK - the Tiny Tickers Charity
Our aims are to improve the understanding, early detection and treatment of cardiovascular disease in babies and mothers through research, training and education. echo uk is an independent, international charity, led by concerned parents and supported by medical experts in the UK and Europe.

European Society of Cardiology
For doctors, nurses and others in the field of cardiology abroad, this site might be of interest: It features scientific information, public information and information about upcoming cardiology conferences.

FreeBooks4Doctors
Over the next few years, many important medical textbooks will be available online, free and in full-text. The unrestricted access to scientific knowledge will have a major impact on medical practice. FreeBooks4Doctors is dedicated to the promotion of free access to medical books over the Internet.

The Heart Institute for Children
The Heart Institute for Children (THIC), founded in 1987, is dedicated to clinical excellence, education and research in the field of congenital and acquired heart disease in children and young adults. Clinical care includes the latest and the most advanced technology. Research is directed towards clinical cardiology as well as basic molecular biology.

Heart Defects Online Message Board
(This used to be HeartCenterOnline) If you find yourself parenting a child with a heart defect, then you could probably use a friendly "ear" to talk through the various issues you face. You'll find a warm and comforting community here.

Hypoplastic Right Heart Syndrome
A page by The Heart Institute for Children

In the News
Pediatric Cardiology Online, sponsored by the New York University School of Medicine, has composed a nice website with pertinent articles for the CHD community. This is a site helpful for parents and professionals alike.

Library of Heart Diagrams
The Royal Children's Hospital Cardiology Department in Melbourne, Australia has a terrific site with diagrams of heart defects, a Frequently Asked Questions page, and much more.

Medical Breakthroughs -- Medical News and Health Information
This is the latest news covering many different facets of medicine including children's health and cardiovascular health.

Medical journals and News
Links to medical journals and medical news

Medical Matrix
Medical Matrix is a free directory of selected medical sites on the Internet. Each site listing has been carefully evaluated by reviewers from our panel of physicians and medical librarians. Medical Matrix lists only those sites that meet our criteria for information quality and site usability, with an emphasis on usefulness to healthcare practitioners.

Multilingual Glossary of medical terms
Here's a great site for professionals and others in the CHD community who may need an understanding of medical terms in more than one language.

Pediatric Cardiology and Congenital Heart Disease
Links, Links and more links to medical information, diagrams, and more.

PediHeart Website
This is the PediHeart webpage run by Dr. Hennein at Loyola.

SADS Foundation (Sudden Arrhythmia Death Syndromes)
Our Mission is to save the lives of children and young adults who are genetically predisposed or otherwise susceptible to sudden death due to cardiac arrhythmia and to provide education and support to families and the medical community who are dealing with these disorders. The SADS Foundation is dedicated to providing information, assistance & hope.

General CHD Information For Doctors:

32nd Bethesda Conference: Care of the Adult With Congenital Heart Disease
Doctors may be interested in this site hosted by the American College of Cardiology. There are opportunities for continuing education, information on the annual scientific session, media, journals, news and more.

3-D Visualization of Congenital Heart Disease
This site features a congenital heart disease overview; patient scan protocol; case studies and examples in literature.

Cardiac Surgery Information HomePage
This site offers heart surgery information, including slide shows of surgical procedures like mitral valve repair, aortic valve and coronary artery bypass surgery, information re. surgical results and patient services.

Cardiothoracic Surgery Network

E-Medicine: Pediatric Cardiology

Heart Surgery Forum
Official Publication of the International Society for Minimally Invasive Cardiac Surgery

PubMed database for medical literature
Links to journal articles related to congenital heart defects.

Pediatric Cardiology Almanac
Multimedia Educational Resources about Williams Syndrome, Tetralogy of Fallot, total anomalous pulmonary venous return (TAPVR), pulmonary stenosis and corrected transposition of the great arteries (C-TGA), along with a Textbook of Angiographic Anatomy.

General CHD Information

Cove Point Foundation - Congenital Heart Disease
Our site is free to the public, is supported by a grant from the Cove Point Foundation, and has been developed under the direction of Allen D. Everett, MD of the Helen B. Taussig Children's Heart Center, Johns Hopkins University.

The Mayo Clinic has a slide show with good illustrations of the most common types of CHD. You can view it HERE

The Hospital for Sick Children in Toronto, Canada has developed a Web site that explains and illustrates how the body works using colourful animations and easy-to-read text. The site is named Child Physiology: How the Body Works and it can be seen at http://www.sickkids.ca/childphysiology/ .
Currently the site covers the normal function of several body organs and systems. In particular, there are sections about the Heart ( http://www.sickkids.ca/childphysiology/cpwp/Heart/heartIntro.htm) and Genetics ( http://www.sickkids.ca/childphysiology/cpwp/Genetics/geneticsintro.htm), which would be especially pertinent to the users of CongenitalHeartDefects.com . In addition, they have developed an educational module on Patent Ductus Arteriosus which can be seen at http://www.sickkids.ca/childphysiology/pda/intro.html. We are continually expanding the site, and in future we plan to add sections covering many more conditions, including ASD, VSD, and other congenital heart defects.

Conditions and Diseases Health Directory

AllHealthLinks.com

Medicaid 101: Prepare Yourself For The Debate
Also available on this site is the fact sheet: Medicaid at a Glance

Baby Hearts Press
Provides links to other CHD sites; a Message Board, chapters from Hypoplastic Left Heart Syndrome: A Handbook for Parents and essays from The Heart of a Mother; Book Reviews of CHD-related books and more!

British Heart Foundation
This is the British version of the American Heart Association.

Cardiac Disease in Children
The American Heart Association's information on CHDs.

Congenital Heart Defects in Children Fact Sheet
From the American Heart Association

DiseasesConditions.com
Directory for all diseases and conditions information - cancer, diabetes, mental health, allergies, depression, anxiety and more.

Focus: Families of Children Under Stress
FOCUS offers emotional, informational, and physical support to families with children with disabilities or ongoing medical needs.

Fontan operation - Pediatric heart surgeon helps you understand the Fontan Operation
Easy-to-understand info on the Fontan operation from a specialist pediatric heart surgeon. "Looking for reliable info about the Fontan operation? I've been writing about the Fontan since 1996"

Heart1.com
Heart1.com offers comprehensive cardiac care information, accomplished through news features, technology reports, searchable databases of the most prevalent venous conditions and possible treatments, as well as interactive tools where patients can tell their stories and ask experts questions.

How the Heart Works: The Heart House
Great site with descriptions and pictures of how the heart works from the Children's Heart Institute.

March of Dimes: Congenital Heart Defects

The Mining Company - Heart Disease/Cardiology
This is the About.com site on Cardiology. Lots of good links.

Pediatric Cardiology and Congenital Heart Disease
Links, Links and more links to medical information, diagrams, and more!

HLHS, SADS and VCFS Information

Baby Hearts Press Provides links to other CHD sites, chapters from Hypoplastic Left Heart Syndrome: A Handbook for Parents and essays from The Heart of a Mother; Book Reviews of CHD-related books and more!

Hypoplastic Left Heart Syndrome (HLHS) Information Page
This site was designed to help parents of babies diagnosed with Hypoplastic Left Heart Syndrome (HLHS).

Australian HLHS Information Network
Support for families living with Hypoplastic Left Heart Syndrome

Library of Heart Diagrams
The Royal Children's Hospital Cardiology Department in Melbourne, Austrailia has a terrific site with diagrams of heart defects, a Frequently Asked Questions page, and much more.

SADS Foundation (Sudden Arrhythmia Death Syndromes)
Our Mission is to save the lives of children and young adults who are genetically predisposed or otherwise susceptible to sudden death due to cardiac arrhythmia and to provide education and support to families and the medical community who are dealing with these disorders. The SADS Foundation is dedicated to providing information, assistance and hope.

Velo-Cardio-Facial Syndrome The Velo-Cardio-Facial Syndrome Foundation is an international not-for-profit, self-help organization dedicated to providing support and information to individuals who are affected by Velo-Cardio-Facial syndrome, their families, physicians and other practitioners. The Foundation is independent of -- and not affiliated with -- any particular institution.

CHD and Learning Disabilities

We have set up a page with information on Learning Disabilities associated with CHDs. Please click HERE to visit this page.

Medical Information Sites

Cardiac Medical Library
For parents: Children's Hospital of Atlanta has a nice Cardiac Medical Library with a variety of information. It includes information on medical terms as well as some information specific to HLHS and Long QT Syndrome, as well as information about heart transplant and some closure devices (CardioSEAL, HELEX and Amplatzer Occluder).

The Cardiomyopathy Association
This site is designed to provide information on the main forms of the heart muscle disease known as Cardiomyopathy.

The Children's Cardiomyopathy Foundation (C.C.F.)
is dedicated to supporting scientific and medical research specific to pediatric cardiomyopathy. The Foundation also works with physicians and affected families to promote education, awareness and advocacy. C.C.F. has a medical advisory board of geneticists and pediatric cardiologists who are all acknowledged leaders in the field of pediatric cardiomyopathy.
Children's Cardiomyopathy Foundation
P.O. Box 547
Tenafly, NJ 07670
Tel: 201-227-7016 (9:00-5:00pm EST)
Email: mailto:info@childrenscardiomyopathy.org

Adult Congenital Heart Disease Center
Successful cardiac surgery in infants and children during the 1960s and 1970s has resulted in a rapidly growing population of adults with congenital heart disease. Some of these patients have cardiac problems which are not typically seen by adult cardiologists. The Joan And Michael Schneeweiss Center for Adult Congenital Heart Disease at New York Presbyterian Hospital was developed to serve the unique needs of this population. Highly specialized care is provided by a team of physicians specifically interested in the problems of adults with congenital heart disease.

A Heart for Sports
A screening program for Hypertrophic Cardiomyopathy

The Heart Center Encyclopedia, Children's Hospital of Cincinatti
We, at The Heart Center, believe that supplying information is a vital component of our dedication to providing the highest level of care to patients and support to their families and their physicians. We have compiled this online encyclopedia in order to provide a comprehensive source of easily accessible information about the disorders that may affect a child's heart and the options that are available to treat those conditions.

HeartCenterOnline
The mission of the HeartCenterOnline is to be the premier cardiovascular specialized health care site on the Internet, to provide cardiovascular patients, their families and other site visitors with the tools they need to better understand the complex nature of heart-related conditions, treatments and preventive care, and to provide services and applications that deliver value to cardiology practices.

HeartPoint
HeartPoint has been created by medical professionals to provide patients with a source of credible information about heart disease. Having any type of disorder of the heart can be scary- we're here so that you understand your heart, and how to take care of it with the best graphic and written explanations we can muster.

In the News
Pediatric Cardiology Online, sponsored by the New York University School of Medicine, has composed a nice website with pertinent articles for the CHD community. This is a site helpful for parents and professionals alike.

Library of Heart Diagrams
The Royal Children's Hospital Cardiology Department in Melbourne, Austrailia has a terrific site with diagrams of heart defects, a Frequently Asked Questions page, and much more.

Medical Breakthroughs -- Medical News and Health Informaion
This is the latest news covering many different facets of medicine including children's health and cardiovascular health.

Pediatric Cardiology Almanac
Multimedia Educational Resources about Williams Syndrome, Tetralogy of Fallot, total anomalous pulmonary venous return (TAPVR), pulmonary stenosis and corrected transposition of the great arteries (C-TGA), along with a Textbook of Angiographic Anatomy.

PediHeart Website
This is the PediHeart webpage run by Dr. Hennein at Loyola.

Angels Here and There
site dealing with issues surrounding critically ill babies, including the following topics:

• Before Baby is Born
• Feelings
• Intensive Care Units
• Making Decisions
• If Baby is not Doing Well
• Choosing a Funeral Home
• What should baby wear?
• Open or Closed Casket
• Burial or Cremation
• A place for Moms
• A place for Dads
• Help for Friends and Family
• Grieving
• Helpful Sites

Bereaved Parents of the USA Bereaved Parents of the USA (BP/USA) is a nationwide organization designed to aid and support bereaved parents and their families who are struggling to survive their grief after the death of a child.

The Compassionate Friends
The mission of The Compassionate Friends is to assist families toward the positive resolution of grief following the death of a child of any age and to provide information to help others be supportive.

The M.I.S.S. Foundation We are a nonprofit 501(c)3 international organization providing immediate and ongoing support to grieving families, helping them to empower themselves by proactive community involvement and volunteerism, and reducing infant and toddler death through research and education.

My Forever Child offers unique memorial keepsakes, remembrance jewelry and sympathy gifts to comfort those touched by the loss of a child, no matter what age.

March of Dimes offers bereaved families a bereavement kit -- they can order it online or call their resource center for one.

SHARE Pregnancy and Infant Loss Support, Inc.
SHARE is a not-for-profit nondenominational organization providing support to those whose lives are touched by the tragic death of a baby through early pregnancy loss, stillbirth or newborn death.

Before Their Time: A Mother's Love Powerful Stories of Mothers Who Have Dealt With The Loss of Their Child

New Grants Available for Families Struggling with Child Health-Related Expenses April 10, 2008

Aubrey Rose Hollenkamp Children's Trust
The Aubrey Rose Hollenkamp Children's Trust Fund will be honoring Aubrey's life by:

1. Awarding educational scholarships for children so that they can better themselves. In Aubrey's three short years, she made a positive impact on many people. These scholarships will be based on how children have made an impact on the people around them
2. Helping families with financial need because of medical expenses of their children.
3. Organizing buying toys and holiday parties to brighten the lives of sick children at our local Children's Hospital.

The Children's Cardiomyopathy Foundation (C.C.F.) is a newly formed 501 (C)(3) tax-exempt, public charity incorporated in New Jersey. C.C.F is dedicated to supporting scientific and medical research specific to pediatric cardiomyopathy. The Foundation also works with physicians and affected families to promote education, awareness and advocacy. C.C.F. has a medical advisory board of geneticists and pediatric cardiologists who are all acknowledged leaders in the field of pediatric cardiomyopathy.
Children's Cardiomyopathy Foundation
P.O. Box 547
Tenafly, NJ 07670
Tel: 201-227-7016 (9:00-5:00pm EST)
Email: info@childrenscardiomyopathy.org

Children's Cardiac Research
The purpose is to benefit Pediatric Cardiology research at the University of Miami and any other Pediatric Cardiac research that the Foundation may designate. In addition to providing support, information and assistance to those families of children with congenital and acquired heart defects.

Children's Heart Foundation
Founded in 1996, the mission of The Children's Heart Foundation is to raise funds to support research towards discovering the causes of and improving the methods of diagnosing, treating and preventing congenital heart defects.

Heart of a Child Foundation
The goal of the Heart of a Child Foundation is to fund research; to find the root causes of congenital heart defects and to improve the care and treatment of children born with these defects.

The Heart to Heart Fund
Founded at New England Medical Center's Floating Hospital for Children, the Heart to Heart Fund provides emotional and financial support to patients and families coping with congenital heart defects. In addition, we strive to enhance funding for groundbreaking research and diagnostic equipment used on our pediatric patients.

Heart to Heart International
Heart to Heart International, Incorporated (HTH) is a non-profit organization that is dedicated to helping children in the developing world who have congenital heart defects. The organization brings children who need surgical intervention to the United States for treatment. Heart to Heart accomplishes this by utilizing a network of participating physicians and hospitals who donate their care and services.

International Children's Heart Foundation: Children and Congenital Heart Defects
The International Children's Heart Foundation hopes to provide direct care to as many children as possible, sending medications, surgical supplies and diagnostic equipment to medical facilities around the world and helping train surgeons from developing nations in this special field, so that they ultimately can provide care for their own people.

The Sydney Mae Taylor Foundation, Inc.
The mission of the Sydney Mae Taylor Foundation is to contribute to the education and well-being of children, especially children with congenital heart defects. Specifically, the organization's purpose is to provide scholarships to children, funding for medical research, financial support to send children to summer camp, and financial backing for families who wish to attend the Compassionate Friends National Conferences.
Sydney Mae Taylor Foundation, Inc.
42 Turnbridge Drive
Lumberton, NJ 08048
609-288-6293
sydneymaetaylor@comcast.net www.sydneymaetaylorfoundation.org

Pediatric Heart Research Association ( Toys For Nicholas )
We have changed our organizational name to Pediatric Heart Research Association (PHRA). Toys for Nicholas will be a division of PHRA. In addition, we have added new members to our Board and Trustees. The caring support of others has inspired us to raise funds for pediatric cardiology research. We believe with more research, many children who are born with heart defects will be able to lead normal healthy lives. Heart abnormalities are the most common birth defect. With more research the cause of some heart defects can be identified and this may lead to a preventative treatment. With more research, effective treatments can be found and babies born with heart defects will be able to lead normal healthy lives.

It is our dream, that one day, Nicholas' life will have helped save hundreds of others.

Bandaids and Blackboards : Adjusting to School For Children Living with Chronic Illness
A great site designed by Joan Fleitas, Ed.D., R.N., Associate Professor of Nursing, Fairfield University, to help people understand what it's like from the perspective of the children and teens who are growing up with medical problems.

Boston Children's Hospital's The Experience Journal
This site is designed to promote the healthy coping of children and their families who must contend with significant heart disease. The Experience Journal is a collection of stories, pictures, and personal experiences from families about what it has been like to live with their children's heart disease. It represents the "collective wisdom" of these children and their parents as well as their health care providers. The site also includes a parent primer for children being hospitalized, a new parent manual for heart transplantation, and cardiology staff narratives.

Building Systems of Care for Children and Youth with Special Health Care Needs
This site is a compilation of presentations from the Tri-Regional Workshops, Institute for Leaders Workshop, and others

Clinic 4 Kids
Specializing in caring for children with autism, pediatric feeding disorders, and other special needs

Homes with Heart
Caryn Huberman Yacowitz has written a wonderful article for the Lucile Packard Foundation for Children's Health about special housing available for people who seek treatment for their children at Lucile Packard but who live outside the region. Click on this link for more information.

Medic Alert
MedicAlert is a service that protects and saves the lives of its Members by providing identification and critical information in an emergency.

My Heart Vs. the Real World
A site by a photographer who has a CHD

Pacemaker and Arrhythmia Information and Support Groups

Shadow Buddies
A Shadow Buddy is a soft, cuddly doll that has the same physical problems that your child does! This can really help when explaining treatments, etc.

Children's Hopes and Dreams
Children's Hopes and Dreams has been serving children with serious childhood illnesses since 1983. We are one of the oldest wish fulfillment organizations in the world. Our programs serve over 14,000 seriously ill children each year.

The Children's Wish Foundation
We Are Children's Wish Foundation International, and we measure our success in smiles.

The Dream Factory
The Dream Factory grants dreams to children who are between the ages of 3 and 18 years who have been diagnosed with critical or chronic illnesses.

Dream Foundation
The mission of the Dream Foundation is to enhance the quality of life for individuals and families battling terminal illnesses. The Dream Foundation is the first and only national wish-granting organization for adults ages 18-65.

Give Kids the World Village
Give Kids the World is a non-profit organization that exists only to fulfill the wishes of all children with life-threatening illnesses and their families from around the world to experience a memorable, joyful, cost-free visit to the Central Florida attractions, and to enjoy the magic of Give Kids the World Village for as long as there is a need.

Grant-A-Wish/The Children's Promise Foundation
Grant-A-Wish/The Children's Promise Foundation (Grant-A-Wish) is a national children's charity that provides supportive services to children, 17 and under, who are battling life-threatening illnesses. Headquartered in Baltimore, Maryland, we offer eight unique programs that provide comfort and hope to kids suffering from Cancer, neurological diseases and various other critical illnesses.

Make A Child Smile
Our mission is to provide emotional and financial support to families whose children suffer from chronic or life-threatening illnesses and also give those who visit the MACS site the opportunity to participate by sending mail to the children.

Make-A-Wish Foundation
We grant the wishes of children with life-threatening illnesses to enrich the human experience with hope, strength, and joy.

Starlight Children's Foundation Home Page
The entire family is affected when a child is sick and the day-to-day joys of childhood often take a back seat to the rigors of treatment and hospitalization. Starlight?s six core programs are designed to restore some of the laughter and happiness that a serious illness takes away from kids and those who love them.

The Sunshine Foundation
The Sunshine Foundation was established in 1984 to improve the quality of life of the individuals served by Sunshine Inc. of Northwest Ohio. The mission of Sunshine is to enhance the lives of people with developmental disabilities and their families.

The CHDWebring List
This is a support group for parents of children with congenital heart defects and anyone else who is affected by CHD. You will find a lot of wonderful caring people on this list.

Congenital Heart Defects Webring
Visit the homepages of families facing the challenges of raising kids with CHDs.
http://www.geocities.com/HotSprings/Spa/1212/webring.htm

The Congenital Heart Disease Webring
The CHD Webring is a collection of web sites about congenital heart disease that are all linked together with a special html fragment.

The HLHS WebRing
Our mission is to continue touching lives, educating people and supporting those who are affected by hypoplastic left heart syndrome.

Kids with Heart Listserv.

PDHeart Exiles
Families with CHD kids, supporting one another!

Yahoo! Groups has the following groups:

achd1970 ACHD Midwest and Beyond BCSpecialCHDKids (British Columbia) CHASEkids CHCF CHD chd babies CHDandPregnancy CHDawareNH chdawareness CHD-babies CHD-ca (CHD - Canada) CHD families of TXChildrens CHD-Grandparents CHDhope chdloss CHDparenting CHD-Scotland CHD-UK chdwebring chdwebringhlhs completeheartblock congenitalheartdefectsupport CTCHDAWARE cwchd (women with CHDs who shouldn't have children) Downs-Heart eurohearts FamiliesWithHeart firsttimemomskidswithchd grandparentsofchd GrievingHearts heart talk

heartbabies HeartlandHearts HeartlandHeartsAngels hearts2gether Hearts4Hearts hearttohearttx HeartSupport HeartswithCHD heartswithchd2 heavenshearts hopeforhearts HRHS KidsWithPacemakers L-TGA MACHDAWARE Mendingheartsforgrandparents NWHearts (Washington) oregonhearts OurChildrensHearts ourhearts OurLittleStars ourtruncusarterioususkids parentsofshoneskids patched hearts loving hands pedihearts precioushearts siblingsofchd SpecialCHDKids supportthechildren TheMassachusettsHeartCoalition TAPVRParents transpositionfixed youngadultswithheartdisorders

Commercial Listservs (requiring a membership fee)
C.H.I.N offers listservs for families and professionals

PediHeart Membership in PediHeart ($20) Includes:

• Information: Access the advanced areas on PediHeart.Org - comprehensive information on congenital heart disease
• Communication: Membership in the PediHeart Mailing List, where parents, patients and practitioners discuss matters pertinent to CHD. The Mailing List is maintained by physicians and nurses specialized in CHD.
• Resources: Access to a network of physicians and nurses who specialize in CHD.
• Contemporary: Updates on medical conferences, latest developments, and links to CHD websites.

News servers
news:alt.support.heart-children
news:alt.support.heart-defects

Camp Del Corazon
Camp Del Corazon Inc. is a 501(c) Non-profit corporation, providing a summer camp for children with heart disease for free. All proceeds are spent entirely on the camp.
5655 Halbrent Ave #10
Van Nuys, CA 91411
Telephone: (818) 901-0323
Toll Free: (888) 621-4800
Fax: (818) 901-0323
E-mail: mailto:info@campdelcorazon.org

Camp Taylor
Camp Taylor, Inc. is a non-profit entirely free camp for children with heart disease. Our camp is located in beautiful Livermore, California on 138 acres of serene landscape. We offer our heart campers age 6-17 yrs. many activities including horseback riding, water sports at Lake Del Valle, 4th of July celebration, arts & crafts, campfire skits and songs, ropes course all under the direct supervision of our pediatric cardiac professionals. Our camp encourages our "heart campers" to bring a sibling along for the adventure.
Contact Information:
Kimberlie Gamino, Executive Director
Camp Taylor, Inc.
PO Box 1722
Modesto, Ca. 95353
(209) 545-4715
E-mail: mailto:kimberlie@kidsheartcamp.org
Website: www.kidsheartcamp.org

FL

The Boggy Creek Gang
The Boggy Creek Gang camping experience is more than a fun-filled getaway. The gang teaches children how to better cope with the day-to-day challenges they face, and offers educational and supportive programs to parents, siblings and other family members. The lessons learned through our programs allow families to better communicate and to understand more fully the difficulties chronically ill children face. In turn, those children also learn about caring for themselves through seminars and support groups led by The Boggy Creek Gang professional staff.
The Boggy Creek Gang
30500 Brantley Branch Road
Eustis, FL, 32736
Phone: (352) 483-4200
Fax: (352) 483-0358
e-mail: mailto:info@boggycreek.org

GA

Camp Braveheart
The mission of Camp Braveheart is to create a positive life experience for all children with complex heart defects through a camping program that promotes: self esteem, socialization among peers, support from other families dealing with complex heart defects, and so much fun!
Please feel free to contact us for more information on our camp or to lend your support.
Camp Braveheart
3495 Brittany Way
Kennesaw, GA 30152
telephone: 1-888-988-9979 or 770-919-2775
email: mailto:campbraveheart@angelfire.com

IN

Camp Moxie
Camp Moxie is a one-week, residential summer camping program held in central Indiana. The camp, for children aged eight to 17, is jam-packed with adventure. From the early morning dip in the pool to evening campfires, campers come together to float the river, hike, conquer the giant swing and high ropes and make new friends. This summer experience inspires much-needed camaraderie, which brings understanding, encouragement, laughter and comfort.
4 Wildwood Court
Brownsburg, IN 46112
(317) 696-3814
Email: cburns@campmoxie.org

LA

Camp Bon Coeur
Camp "Good Heart" is a non-profit two week residential cardiac camp designed to give children with acquired or congenital heart defects an opportunity to participate in a summer camp program.
Camp Bon Coeur
A Rehabilitative Cardiac Camp
P.O. Box 53765
Lafayette, LA 70505
Telephone: (318) 233-8437

MA

The Edward J. Madden Memorial Open Hearts Camp is a camp located in the Berkshires, in western Massachusetts, for children ages 8-13 who have had, and are fully recovered from, open heart surgery or a heart transplant. The camp operates three age specific sessions, and one 'Special Hearts' session for children who have special psycho-social needs that are related to their heart surgery. The camp is free for children to attend, and has been in operation for over 40 years.

Edward J. Madden Memorial Open Hearts Camp
250 Monument Valley Road
Great Barrington, MA 01230
email: info@openheartscamp.com or call toll free 1-888-611-1113

MD

Dragonfly Heart Camp
P.O.Box 454
Chestertown, Maryland 21620-0454
director@dragonflyheartcamp.org
Dragonfly Heart Camp is for kids and ages 7 * 17 with Cardiac Disease and Pulmonary Hypertension. The camp is located on Maylands Eastern Shore of the Chesapeake Bay . The camp is non profit and free to all campers.

MN

Camp ODAYIN strives to provide a safe, fun, and stigma-free camp experience for children with heart disease, regardless of socioeconomic status. Our camp offers the opportunity to strengthen self-confidence, gain independence, develop life skills, and meet other young people with similar health, emotional, and social concerns. Camp Odayin’s residential camps in Northern Minnesota as well as day camp and Family Camp in the Twin City metro area serves campers, ages 6 to 17.
Camp Odayin
P.O. Box 2068
Stillwater, MN 55082
651.351.9185
1.866.9.ODAYIN
Email: info@campodayin.org

MO

Camp Systole
Offered through:
Children's Mercy Hospital
2401 Gillham Road
Kansas City, MO 64108
816-234-3000

The Children's Mercy Section of Cardiology, with the support of community volunteers, businesses and organizations, offers a week-long camp experience each summer especially for children with cardiac-related disorders.

The camp experience is free of charge for each participant. Activities include swimming, hiking, horse-back riding, crafts, model rocketry, and games. Additionally, there are educational sessions for the participants to learn more about cardiac disorders. Camp Systole is intended to provide a week of fun, and to allow participants to engage in rewarding activities which promote personal development.

NC

Camp Kaliedoscope (sponsored by Duke Medical Center)
Kaleidoscope takes place at Camp Graham, a Girl Scout camping facility on Kerr Lake, near Henderson, NC. There are four camping units at Camp Graham. Camp Kaleidoscope occupies one of the units, and Girl Scout groups from various parts of North Carolina occupy others. Special visitors from the Department of Pediatrics frequent Camp K as well.
For more information call 1-888-ASK DUKE (toll free), Monday - Friday, 7:30AM - 6:00PM EST.

NJ/NY

Hope with Heart
The Hope with Heart organization provides a week long camp for children with heart conditions to be able to connect with other children with similar health issues, to realize that they are not alone and to enjoy their childhood as every child should.
Hope with Heart
PO Box 618
Hewitt, NJ 07421
E-mail: mailto:hopewithheart@hotmail.com
http://www.hopewithheart.com/

OH

Children's Hospital Heart Camp
Children's Hospital
700 Children's Drive
Columbus, OH 43205
Phone: (614) 722-2530
Heart Camp - Weekend camp for cardiology/thoracic surgery patients ages seven to 18
Contact: Mary Rummell at 614-722-2530

OK

CHAMP Camp
CHAMP (Children with Heart Abnormalities have Much Potential) Camp is a week-long camp designed to promote friendships, support networks, knowledge base, and coping skills among children with heart disorders and their siblings.

Located in NorthEastern Oklahoma, the Camp serves children ages 7-16 years of age as resident campers, and 4-8 years of age as day campers (shuttle transportation available to and from Tulsa). Children with heart problems ages 15 and older function as junior counselors, assisting the counselor and camping staff.

The camp is located at Shepherd's Fold Ranch in Avant, OK approximately 15 miles north of Skiatook, a 45- minute drive from Tulsa. Nurses are on-site at all times, and physician/pediatric cardiologist coverage is available at all times by phone or in person.

2002 is the 8th annual CHAMP Camp. Dates are June 9-14th, 2002. Space is limited to 30 female and 30 male resident/overnight campers; no limit on day camper capacity. The camp is subsized by the American Heart Association through United Way funds. Individual camper costs are $50 for day campers and $100 for resident campers; scholarships are available for those unable to pay this amount.

Contact information:

Debi Lammert RN CNS
(918) 494-5470
DSLammert@SaintFrancis.com

PA

Camp Victory
P.O. Box 810
Millville, PA, 17846
Phone: (570) 458-6530
E-mail: mailto:fun@campvictory.org

Heart Camp (CHOP - Penn.)
Children's Heart Center
3705 Fifth Avenue
Pittsburgh, PA 15213-2583
(412) 692-5540
Keith McIntire, camp director (412) 821-1906 or
Heart Camp office (412) 692-5540

TN

Cardiac Kids Camp
LeBonheur Children's Medical Center
50 North Dunlap Street
Memphis, TN 38103
The annual Cardiac Kids Camp is designed for children ages 8-18 with cardiac-related diagnoses. Campers participate in nature hikes, fishing, swimming, softball, volleyball, rope courses, crafts, track and field activities and healthy living education. Nurses, physicians, cardiovascular technologists, volunteers and former heart patients serve as counselors for the camp. Cardiac Kids Camp participants come from all over the Mid-South. The camp is held at Lakeshore United Methodist Campground in Eva, TN.
For more information about camp, contact (901) 572-4562.

TX

Camp John Marc
Business Office Address:
8111 Preston Road, Suite 807
Dallas, TX 75225
Phone: (214) 360-0056
Fax: (214) 368-2003
Campsite Address:
3247 County Road 1105
Meridian, TX 76665
Phone: (254) 635-8811
Fax: (254) 635-4441
sponsored by Children's Medical Center of Dallas

WV

Camp Mountain Heart
Ripley, WV
Dates of operation: July 20 - July 26, 2008
campmtheart@gmail.com
304-864-6755

Geographical Index of Transplant Support Groups

American Share Foundation
American Share Foundation's website is designed to provide information to the transplant community, including patients, families, caregivers, healthcare professionals, support networks, and the general public and does not constitute medical advice.
http://www.asf.org
John S. Abbott
Founder of American Share Foundation & ASCOT
E-mail: mailto:jabbott@ntx.com (John Abbott)

CHERUBS
CHERUBS is a non-profit organization formed to build a Communication network, among other Help organizations, that will link people, Educational leaders, Registration of "The Gift of Life" donors and Unification programs for Babies' Sake.
http://www.cherubs.org/index.html
CHERUBS
P.O. Box 2292
North Bend, WA
98045
E-mail: mailto:CHERUBS@CHERUBS.ORG

COTA (Children's Organ Transplantation Association)
The Children's Organ Transplant Association provides fundraising assistance for children needing life-saving transplants and promotes organ, marrow and tissue donation.

National Transplant Assistance Fund
http://www.transplantfund.org/
6 Bryn Mawr Avenue
P.O. Box 258
Bryn Mawr, PA, USA 19010
Telephone: (800) 642-8399 or (610) 527-5056
Fax: (610) 527-5210
e-mail: mailto:NTAF@transplantfund.org

The New England Organ Bank
New England Organ Bank
One Gateway Center
Newton, MA 02458
Phone: 800-446-NEOB
E-mail: mailto:info@neob.com

Transplant Connections
Here at Transplant Connections we believe we've put together the best and biggest transplant directory and transplant resource site on the Internet. We've got hundreds of pages, with hundreds of transplant links organized in a way to help you review the "transplant" information you're seeking FAST.

Transplant Recipients International Organization (TRIO)
TRIO is a non-profit international organization committed to improving the quality of lives touched by the miracle transplantation through support, advocacy, education, and awareness.
Transplant Recipients International Organization, Inc.
2117 L St. NW # 353
Washington, DC 20037-1524
(202) 293-0989
(800) 874-6386 Toll Free
Fax: (415) 239-8727
E-mail: TRIOIntl@aol.com

United Network for Organ Sharing
The transplant community is joined under a nationwide umbrella: The United Network for Organ Sharing (UNOS), a nonprofit charitable organization, maintains the nationwide organ transplant waiting list under contract with the Health Resources and Services Administration of the U.S. Department of Health and Human Services.

World Children's Transplant Fund
The World Children's Transplant Fund (WCTF) is a unique and special organization. Our mission is to provide as many opportunities as possible for lifesaving pediatric transplant surgery to children of the world.
http://wctf.org
World Children's Transplant Fund
16000 Ventura Blvd.
Suite 103
Encino, California 91436
Telephone: (818) 905-9283
Fax: (818) 905-9315
E-mail: http://www.congenitalheartdefects.com/

AIRLIFELINE
provides air transportation to ambulatory patients in need of financial assistance.

American Airlines "Miles For Kids In Need"

Children's Transport for Life
manages and coordinates no-cost charitable child transport patient programs on behalf of children who need access to medical research centers and disease-specific treatment programs.
PO Box 1940
Manassas, VA 20108-0804
1-888-675-1405
1-800-296-1191
(703) 361-1792 (Fax)
childlife@aol.com

Corporate Angel Network
flies patient with 2 adults to necessary destination on a corporate jet that has empty seats available.
Westchester County Airport
Building One
White Plains, NY 10604
(914) 328-1313 (8:30-4:30 EST M-F)
info@corpangelnetwork.org

LIFELINE PILOTS
Need to have a letter from the doctor saying it is okay for the patient to fly. Provides free air transportation on private aircraft for health care and other compelling human needs.
Byerly Aviation Bldg. 3rd Fl.
6100 W. Dirksen Parkway
Peoria, IL 61607
1-800-822-7972
(309) 697-6865
(708) 524-8937
(309) 697-6541 (Fax)
nablake@lifelinepilots.org

MERCY MED FLIGHT - is a charitable air ambulance.
200 Texas Way, Hanger 23N
Fort Worth, TX 76106-2782
mmf@mercymedflight.org

MERCY MEDICAL AIRLIFT
Our mission is to facilitate a charitable means of long distance medical air transport for all medically indigent, low-income and financially vulnerable patients -- thereby ensuring equal access to distant specialized medical treatment or to appropriate facilities and settings for continuing care.
4620 Haygood Rd., Suite 8
Virginia Beach, VA 23455
1-888-675-1405
(747) 318-9175
(757) 318-9107 (Fax)
mercymed@aol.com

Miracle Flights For Kids
(702) 261-0494
Fax: (702) 261-0497
Founded in Green Valley, Nevada, in 1985, Miracle Flights For Kids is a nonprofit organization providing no cost air transportation for children and families to hospitals and specialized health care facilities around the country. There is no charge for any of our services. We will fly as far as needed, and as many times as necessary, to meet the needs of the families we serve.

NATIONAL PATIENT AIR TRANSPORT HELPLINE (NPATH)
provides referrals to charitable air medical transportation.
PO Box 1940
Manassas, VA 20108-0804
1-800-296-1217
(703) 361-1191
(757) 318-9145
(703) 361-1792 (Fax)
npath@aol.com

NAVY MARINE CORPS RELIEF SOCIETY
- provides interest-free loans or grants to help with emergency needs such as emergency transportation, funeral expenses, medical/dental bills, food, rent, and utilities, and child care expenses. Also has visiting nurses performing house calls and instruction to mothers and newborns as well as gives out layettes (junior seabags) to new parents. They also have budget counseling which provides training, education, and remedial counseling.
Executive Director, Mrs. Presha Merritt
Quantico, VA 22134
(703) 640-7137

PILOTS FOR CHRIST INTERNATIONAL
- provides free air transport to individuals and groups in need of transportation for ambulatory persons who can ride in small aircraft to and from treatment and relatives who need to visit seriously ill patients.
(410) 363-8837
geoclark@juno.com

UWA AND DELTA SKYWISH
- uses donated frequent flyer miles to provide Delta tickets to send individuals with a life threatening illness to receive medical treatment.
1-800-UWA-2757

VOLUNTEER PILOTS ASSOCIATION
- provides air transport to needy people for medical treatment.
PO Box 95
Hickory, PA 15340
(724) 356-4007 (voice and Fax)

WINGS OVER MID-AMERICA
- flies people in need.
Kings Aviation
New Century Air Center (KIXD)
New Century, KS 66031-0019
1-800-474-9464
(816) 421-2300
(816) 421-2409 (Fax)
wings@microlink.net