Information | Noonan Syndrome Foundation

ABOUT US

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

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 was elected to the role of President of the Board of Directors in 2018. She currently lives in the Kansas City area. Her contact information is Amanda@teamnoonan.org.

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.

Eddie has worked with many non-profit groups in the past, helping with business development, grant writing and public outreach. He wanted to do more with NSF to support his niece who has Noonan syndrome. Eddie has a B.A. in Accounting and an MBA, and has 17 years of accounting and finance experience, making him a perfect fit for the role of Treasurer. His contact information is Eddie@teamnoonan.org.

Cory recently got involved with NSF and is serving as Secretary. His 7-year old son Blake was diagnosed with Noonan syndrome at 1 year old. He lives with his wife, Blake, and 2-year old daughter in Anchorage, Alaska. His contact information is Cory@teamnoonan.org.

Kam recently joined the Board of Directors to help support the NSF community. She has a son with Noonan syndrome and is passionate about helping to educate others about NS and being an advocate for the community. Her contact information is Kam@teamnoonan.org.

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