Ann Yurcek
Advocacy, Parenting, Resources, Videos 5. Noonan Syndrome Foundation
www.teamnoonan.org
The NSF is the leading 501(c)(3) nonprofit charitable organization for Noonan syndrome. Its mission is to "Support. Educate. Advocate."
6. RASopathiesNet
rasopathiesnet.org
RASopathies are a group of genetic syndromes that may be as common as 1:1,000. The RASopathy syndromes include Cardio-facio-cutaneious (CFC), Costello (CS), LEOPARD/NSML, Neurofibromotosis type 1 (NF1), and Noonan (NS). RASopathiesNet is the product of the RASopathies Network USA, a 501c3 nonprofit, and the Rasopathies Network UK. Its mission is to advance research of the RASopathies by bringing together families, clinicians and scientists.
From the publisher: “In this book, internationally recognized experts review the most important advances regarding the group of human developmental disorders caused by constitutive dysregulation of the Ras-MAPK signalling pathway, including Noonan, cardiofaciocutaneous, LEOPARD and Costello syndromes. A historical overview given by Jacqueline Noonan is followed by chapters dedicated to comprehensive clinical summaries of each condition and up-to-date reviews on associated gene mutations and molecular pathomechanisms.”
Author Ann Yurcek was "just" a mom when her story begins with the birth of her daughter. Becca surprised everyone with a rare genetic disorder called Noonan syndrome. As Becca struggled to survive, her family was plunged into poverty. Their remarkable journey out of poverty is a story of its own, but within the pages lie secrets much more important that we all should know.
www.childrenscardiomyopathy.org/index.php
A national nonprofit organization focused on pediatric cardiomyopathy, a chronic disease of the heart muscle. CCF is dedicated to accelerating the search for cures while improving diagnosis, treatment, and qualify of life for children affected by cardiomyopathy.
www.achaheart.org
Support for adults with congenital heart disease, education, and resources. Offers a US nationwide search for local pediatric support groups.
mendedlittlehearts.org
Mended Little Hearts empowers families affected by congenital heart disease (CHDs) through peer-to-peer support services, education, connecting families with resources, and creating awareness and advocacy.
conqueringchd.org
The Pediatric Congenital Heart Association’s mission is to “Conquer Congenital Heart Disease,” and its key purpose is to be the resounding voice of the pediatric patient population through collaboration with patients, parents, providers, and partner organizations in order to improve quality and outcomes through CHD education, support, research, and awareness.
www.childrenscbf.org
The Children's Cancer and Blood Foundation (CCBF), through its support of the Division of Pediatric Hematology and Oncology, has created a standard of excellence in the treatment of children with chronic, life-threatening blood disorders since 1952.
www.conquerchiari.org/index.html
The C&S Patient Education Foundation is dedicated to improving the experiences and outcomes of Chiari and syringomyelia patients through education, awareness, and research.
www.dysautonomiasupport.org
A U.S.-based 501(c)(3) nonprofit organization providing support, resources, education, and advocacy for patients affected by the many forms of Dysautonomia and related conditions like Connective Tissue Disorders, Mast Cell Activation Disorders, Chiari Malformation, and Gastric Motility Disorders.
www.epilepsy.com
The Epilepsy Foundation is a national nonprofit with nearly 50 local organizations through the United States. Its mission: to lead the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures, and save lives.
www.feedingtubeawareness.org
Feeding Tube Awareness was founded to support parents of children who are tube-fed, while raising positive awareness of tube feeding as a lifesaving medical intervention.
hgfound.org
Human Growth Foundation is a voluntary nonprofit organization whose mission is to help children and adults with disorders of growth and growth hormone through research, education, support, and advocacy.
magicfoundation.org
MAGIC Foundation is the global leader in endocrine health, advocacy, education, support, and events.
www.scoliosis.org
The National Scoliosis Foundation has a singular focus: To improve as much as possible the lives of people with scoliosis by advocating, raising awareness, providing patient support and resources, and fostering collaboration and communication among the scientific, medical, health care, and patient communities.
hypermobility.org
The HMSA support and health-care information to people who have hypermobility syndromes.
primaryimmune.org
The Immune Deficiency Foundation is the national patient organization dedicated to improving the diagnosis, treatment, and quality of life of persons with primary immunodeficiency diseases through advocacy, education, and research.
51 Websites, Videos, and Other Resources on Noonan Syndrome
Noonan syndrome has been called "one of the most common rare syndromes you’ve never heard of.” It is a genetic disorder that causes abnormal development of multiple parts of the body. Part of a group of related conditions called the RASopathies, it is estimated to be found in 1:1,000 to 1:2,500 persons worldwide. The following resources can help you learn more about Noonan syndrome and related disorders, and find support for your family if you're parenting a child diagnosed with Noonan syndrome. February is Noonan Syndrome Awareness Month, and February 23rd is Noonan Syndrome Awareness Day. Many with Noonan syndrome will have congenital heart disease, and February is Congenital Heart Awareness Month.About Noonan Syndrome
Consult these resources for reliable general information.1. NORD National Organization for Rare Disorders
rarediseases.org/rare-diseases/noonan-syndrome/2. Mayo Clinic
www.mayoclinic.org/diseases-conditions/noonan-syndrome/home/ovc-202292043. Genetics Home Reference at the US National Library of Medicine
ghr.nlm.nih.gov/condition/noonan-syndrome4. GARD Genetic and Rare Diseases Information Center
rarediseases.info.nih.gov/diseases/10955/noonan-syndromeNoonan Syndrome Organizations
5. Noonan Syndrome Foundation
www.teamnoonan.org
The NSF is the leading 501(c)(3) nonprofit charitable organization for Noonan syndrome. Its mission is to "Support. Educate. Advocate."
Noonan Syndrome and RASopathies Research
6. RASopathiesNet
rasopathiesnet.org
RASopathies are a group of genetic syndromes that may be as common as 1:1,000. The RASopathy syndromes include Cardio-facio-cutaneious (CFC), Costello (CS), LEOPARD/NSML, Neurofibromotosis type 1 (NF1), and Noonan (NS). RASopathiesNet is the product of the RASopathies Network USA, a 501c3 nonprofit, and the Rasopathies Network UK. Its mission is to advance research of the RASopathies by bringing together families, clinicians and scientists.
Noonan Syndrome Social Media Groups
Additional Noonan syndrome worldwide Facebook Groups may be found by searching Facebook or visiting www.teamnoonan.org or wessland.com/noonansyndrome.htm for information and links.7. Noonan Syndrome Foundation Business Page
www.facebook.com/NoonanSyndromeFoundation/ Open page raising awareness, sharing Noonan syndrome information, and sharing Noonan Syndrome Foundation updates.8. Noonan Syndrome Foundation Twitter Page
twitter.com/NoonanSyndrome19. Noonan Syndrome Foundation Online Support Group
www.facebook.com/groups/Noonansyndromefoundation/ Closed Facebook Group. The NSF online support group has been set up so that families and individuals affected by Noonan syndrome have a place to turn to for support.10. NSF Teen and Youth Adult Facebook group
www.facebook.com/groups/198839776805589/ Closed Facebook group for teens and young adults 13 to 21 only.11. NSF Adult Living with Noonan Syndrome Facebook group
www.facebook.com/groups/1548502325380251/ Closed Facebook group for adults affected by Noonan syndrome only12. NSF Noonan Syndrome Angels: Support for Those Left Behind
www.facebook.com/groups/368389789978240/ Closed Facebook group for adults who have lost a family member with Noonan syndrome.13. The RASopathies Families
www.facebook.com/groups/noonanfamily/ Closed Facebook group requires administrative approval for admission. Membership limited to those directly affected by RASopathies (including Noonan syndrome, CFC syndrome, Costello syndrome, Noonan Syndrome with Multiple Lentigines, and Neurofibromatosis Type 1).14. Tiny Titan, Growing Up With Noonan Syndrome Caregivers Support Group
www.facebook.com/groups/noonansyndromecaregiverssupport/ Closed Facebook group supporting caregivers who care for children/adults with Noonan syndrome sharing support, resources, articles and advocacy information.Resources
15. Noonan Syndrome Clinical Management Guidelines by DYSCERNE
rasopathiesnet.org/wp-content/uploads/2014/01/265_Noonan_Guidelines.pdf16. GEMSS Genetics Education Materials for School Success
www.gemssforschools.org/conditions/noonan/default The aim of GEMSS is to share information on children with genetic health conditions to help teachers and parents understand the needs of these students so they can succeed in school and life.17. Noonan Syndrome On the Web
wessland.com/noonansyndrome.htm An online guide to resources, articles, and organizations on Noonan syndrome.18. Noonan Syndrome: The Most Common Syndrome You’ve Never Heard Of
iowapublicradio.org/post/noonan-most-common-medical-syndrome-youve-never-heard#stream/0 Radio Interview with Dr. Jacqueline Noonan and others on Iowa Public Radio, February 27, 2014.19. Post Traumatic Stress Disorder in Children
www.stanfordchildrens.org/en/topic/default?id=post-traumatic-stress-disorder-in-children-90-P02579Blogs
20. Everything Noonan Syndrome
noonansyndrome.blogspot.com An online resource for sharing anything about Noonan syndrome. Articles, newsworthy news, research abstracts and resources.21. Keeping Up with the Tiny Titan
annystribe.blogspot.com Blog from Ann Yurcek, mother of a daughter with complex Noonan syndrome and award-winning author of Tiny Titan: Journey of Hope.22. Dear Abby
dearaberdeen.blogspot.com23. Meet the Parkers
meettheparkersoregon.blogspot.com/p/meet-ezra.html24. My Journey with Chance
www.myjourneywithchance.com25. Struggling to Thrive
strugglingtothrive.com26. The Sweet One: Living with Noonan Syndrome
www.thesweetone.ca27. Toni’s Bio Blog
tonisbioblog.blogspot.com/2015/03/noonan-syndrome.htmlNoonan Syndrome Videos
28. "An Overview of Noonan Syndrome"
By Bruce Gelb MD, April 11, 201329. "Cognition, Learning and Behaviors in Noonan Syndrome"
By Rene Pierpont, PhD, December 14, 201330. "Noonan Syndrome Genetics 101 Webinar"
Beth Denenberg, MS LCGC, Feb 17, 201331. “Overview of Noonan Syndrome”
The Noon Syndrome Foundation and Dr. Patroula Smpokou MD, FACMG, November 20, 201432. "RASOPATHIES & THE HEART"
by Bruce Gelb MD, February 8, 201333. “The Beautiful Faces of Noonan Syndrome”
The Noonan Syndrome Foundation34. “Tiny Titan, The Pain is Real”
Books
35. Noonan Syndrome and Related Disorders: A Matter of Deregulated Ras Signaling edited by M. Zenker
From the publisher: “In this book, internationally recognized experts review the most important advances regarding the group of human developmental disorders caused by constitutive dysregulation of the Ras-MAPK signalling pathway, including Noonan, cardiofaciocutaneous, LEOPARD and Costello syndromes. A historical overview given by Jacqueline Noonan is followed by chapters dedicated to comprehensive clinical summaries of each condition and up-to-date reviews on associated gene mutations and molecular pathomechanisms.”
36. Tiny Titan: One Small Gift by Ann Yurcek
Author Ann Yurcek was "just" a mom when her story begins with the birth of her daughter. Becca surprised everyone with a rare genetic disorder called Noonan syndrome. As Becca struggled to survive, her family was plunged into poverty. Their remarkable journey out of poverty is a story of its own, but within the pages lie secrets much more important that we all should know.
Organizations that Focus on Issues Common to People with Noonan Syndrome
Heart
37. Children’s Cardiomyopathy Foundation
www.childrenscardiomyopathy.org/index.php
A national nonprofit organization focused on pediatric cardiomyopathy, a chronic disease of the heart muscle. CCF is dedicated to accelerating the search for cures while improving diagnosis, treatment, and qualify of life for children affected by cardiomyopathy.
38. Adult Congenital Heart Association
www.achaheart.org
Support for adults with congenital heart disease, education, and resources. Offers a US nationwide search for local pediatric support groups.
39. Mended Little Hearts National Organization
mendedlittlehearts.org
Mended Little Hearts empowers families affected by congenital heart disease (CHDs) through peer-to-peer support services, education, connecting families with resources, and creating awareness and advocacy.
40. Pediatric Congenital Heart Association
conqueringchd.org
The Pediatric Congenital Heart Association’s mission is to “Conquer Congenital Heart Disease,” and its key purpose is to be the resounding voice of the pediatric patient population through collaboration with patients, parents, providers, and partner organizations in order to improve quality and outcomes through CHD education, support, research, and awareness.
Bleeding and Cancer
41. The Children’s Cancer and Blood Foundation
www.childrenscbf.org
The Children's Cancer and Blood Foundation (CCBF), through its support of the Division of Pediatric Hematology and Oncology, has created a standard of excellence in the treatment of children with chronic, life-threatening blood disorders since 1952.
Chiari Malformations
42. Conquer Chiari
www.conquerchiari.org/index.html
The C&S Patient Education Foundation is dedicated to improving the experiences and outcomes of Chiari and syringomyelia patients through education, awareness, and research.
Dysautonomia
43. Dysautonomia Support Network
www.dysautonomiasupport.org
A U.S.-based 501(c)(3) nonprofit organization providing support, resources, education, and advocacy for patients affected by the many forms of Dysautonomia and related conditions like Connective Tissue Disorders, Mast Cell Activation Disorders, Chiari Malformation, and Gastric Motility Disorders.
Epilepsy
44. Epilepsy Foundation
www.epilepsy.com
The Epilepsy Foundation is a national nonprofit with nearly 50 local organizations through the United States. Its mission: to lead the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures, and save lives.
Feeding Tube
45. Feeding Tube Awareness Foundation
www.feedingtubeawareness.org
Feeding Tube Awareness was founded to support parents of children who are tube-fed, while raising positive awareness of tube feeding as a lifesaving medical intervention.
Growth and Scoliosis
46. Human Growth Foundation
hgfound.org
Human Growth Foundation is a voluntary nonprofit organization whose mission is to help children and adults with disorders of growth and growth hormone through research, education, support, and advocacy.
47. MAGIC Foundation
magicfoundation.org
MAGIC Foundation is the global leader in endocrine health, advocacy, education, support, and events.
48. National Scoliosis Foundation
www.scoliosis.org
The National Scoliosis Foundation has a singular focus: To improve as much as possible the lives of people with scoliosis by advocating, raising awareness, providing patient support and resources, and fostering collaboration and communication among the scientific, medical, health care, and patient communities.
Hypermobility
49. Hypermobility Syndromes Foundation
hypermobility.org
The HMSA support and health-care information to people who have hypermobility syndromes.
Immune Deficiency
50. Immune Deficiency Foundation
primaryimmune.org
The Immune Deficiency Foundation is the national patient organization dedicated to improving the diagnosis, treatment, and quality of life of persons with primary immunodeficiency diseases through advocacy, education, and research.
JMML/Juvenile Myelomonocytic Leukemia
51. JMML Foundation
thejmmlfoundation.wildapricot.org The mission of the JMML Foundation is to cure JMML and to improve the quality of life of JMML patients and families worldwide through research, education, advocacy, and charity.
