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Ann Yurcek
BY Ann Yurcek

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-20229204

3. Genetics Home Reference at the US National Library of Medicine

ghr.nlm.nih.gov/condition/noonan-syndrome

4. GARD Genetic and Rare Diseases Information Center

rarediseases.info.nih.gov/diseases/10955/noonan-syndrome

Noonan Syndrome Organizations

5. Noonan Syndrome FoundationNoonan 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. RASopathiesNetNoonan Syndrome Resources: RASopathies.net

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/NoonanSyndrome1

9. 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 only

12. 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.pdf

16. 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-P02579

Blogs

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.com

23. Meet the Parkers

meettheparkersoregon.blogspot.com/p/meet-ezra.html

24. My Journey with Chance

www.myjourneywithchance.com

25. Struggling to Thrive

strugglingtothrive.com

26. The Sweet One: Living with Noonan Syndrome

www.thesweetone.ca

27. Toni’s Bio Blog

tonisbioblog.blogspot.com/2015/03/noonan-syndrome.html

Noonan Syndrome Videos

28. “An Overview of Noonan Syndrome”

By Bruce Gelb MD, April 11, 2013

29. “Cognition, Learning and Behaviors in Noonan Syndrome”

By Rene Pierpont, PhD, December 14, 2013

30. “Noonan Syndrome Genetics 101 Webinar”

Beth Denenberg, MS LCGC, Feb 17, 2013

31. “Overview of Noonan Syndrome”

The Noon Syndrome Foundation and Dr. Patroula Smpokou MD, FACMG, November 20, 2014

32. “RASOPATHIES & THE HEART”

by Bruce Gelb MD, February 8, 2013

33. “The Beautiful Faces of Noonan Syndrome”

The Noonan Syndrome Foundation

34. “Tiny Titan, The Pain is Real”

Books

Noonan Syndrome Resources: Noonan Syndrome and Related Disorders Ed. M. Zecker35. 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.”

Noonan Syndrome Resources: Tiny Titan by Ann Yurcek36. 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

Noonan Syndrome Resources: Children's Cardiomyopathy Foundation37. 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.

Noonan Syndrome Resources: Adult Congenital Heart Association38. 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.

Noonan Syndrome Resources: Mended Little Hearts39. 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.

Noonan Syndrome Resources: Pediatric Congenital Heart Association40. 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

Noonan Syndrome Resource: Childrens Cancer and Blood Foundation41. 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

Noonan Syndrome Resources: ConquerChiari42. 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

Noonan Syndrome Resources: Dysautonomia Support Network43. 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

Noonan Syndrome Resources: Epilepsy Foundation44. 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

Noonan Syndrome Resources: Feeding Tube Awareness Foundation45. 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

Noonan Syndrome Resources: Human Growth Foundation46. 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.

Noonan Syndrome Resources: Magic Foundation47. MAGIC Foundation

magicfoundation.org

MAGIC Foundation is the global leader in endocrine health, advocacy, education, support, and events.

Noonan Syndrome Resources: National Scoliosis Foundation48. 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

Noonan Syndrome Resources: Hypermobility Syndromes Association49. Hypermobility Syndromes Foundation

hypermobility.org

The HMSA support and health-care information to people who have hypermobility syndromes.

Immune Deficiency

Noonan Syndrome Resources: Immune Deficiency Foundation50. 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.

Ann Yurcek

Written on February 23, 2017 by:

Ann Yurcek is a writer, mentor, and advocate in the special needs and foster/adoption communities. She wrote the Mom's Choice Award-winning memoir Tiny Titan: Journey of Hope and continues the journey at Keeping Up with the Tiny Titan. Ann has parented twelve children, seven with special needs, six from adoption.
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