Information | Noonan Syndrome Foundation

About Us

The Noonan Syndrome Foundation (NSF) is the leading 501(c)(3) non-profit, charitable Noonan syndrome (NS) organization. Our mission is to Support, Educate, and Advocate for those with Noonan Syndrome.

Board of Directors

Tammy

Cari has been a part of the foundation since 2012 and and has held many different roles, including her current role as Vice President. She is a nurse and has been working at her local hospital for the past 23 years. She has 3 kids, including her daughter Grace that has Noonan syndrome. Her contact information is Cari@teamnoonan.org.

Amanda has a B.S. in Nursing and has been working in critical care for 17 years. She has 3 kids, including her 9-year old that was diagnosed with Noonan syndrome at 4 months old. She started volunteering with the foundation in 2016 and served as President of the Board of Directors from 2018-2024. She is currently serving as the Treasurer. She lives in the Kansas City area. Her contact info is Amanda@teamnoonan.org.

Lindsay

Cory recently got involved with NSF and is serving as Secretary. His 10-year old son Blake was diagnosed with Noonan syndrome at 1 year old. He lives with his wife, Blake, and 5-year old daughter in Anchorage, Alaska. His contact information is Cory@teamnoonan.org.

Krystal was born into the world of advocacy after the birth of her 3rd child in 2019, who was born with Noonan Syndrome, SOS1. After suffering from severe polyhydramnios during her pregnancy, having a "normal" amniocentesis and microarray resulted & a failed amnio-reduction, Krystal gave birth to her daughter, Annie, prematurely in May 2019. WES testing would confirm Annie's diagnosis at 16 weeks old. Since that day, Krystal has served on the Board of Directors for the 501c3 nonprofit organization, Know Polyhydramnios, in an effort to bring awareness to the link between polyhydramnios during a mothers pregnancy and the need for more extensive genetic testing to better prepare parents and doctors for what to expect after birth to help save lives. Krystal resides in Easley, SC and is married to her high-school sweetheart, has 3 children and owns her own small business, Mama K's Homemade. Krystal is also the owner of Wonderfully Rare, a small not for profit entity inspired by her daughter, where she allows her creativity to flow by designing annual T-Shirts for Noonan Syndrome Awareness Month and gives back 100% of the proceeds to the foundation in fundraising efforts. Krystal is thrilled to further her involvement with the Noonan Syndrome Foundation and looks forward to volunteering within the organization as a member of the board while being a voice for ALL individuals living with or affected by Noonan Syndrome.

Hope & Help Now

We know that effective medical treatments may be years away and that the NS community needs our help now. That is why the NSF provides an online support group; to help each other cope with the challenges of raising a child with a medically involved disorder. Please join our private Facebook Group titled the Noonan Syndrome Foundation.

Did you know that NS may be as common as Down syndrome? NS may impact 316,600 people in the United States and 7,094,286 people worldwide.

Noonan Syndrome - The Most Common Rare Syndrome You've Never Heard Of