CCHS Foundation

The CCHS Foundation is a division of the CCHS Family Network, a 501(c)(3) organization. Meet our members below!

Our mission focuses on raising funds to further CCHS research via annual grant awards, raising international awareness and facilitating educational programs, and supporting CCHS families in need. We champion scientific and informative advances that will empower individuals living with Congenital Central Hypoventilation Syndrome and their loved ones to live full and productive lives. Our vision is a future where CCHS is no longer a life-threatening diagnosis!

 

Donation Distribution

donation_distributionDonations are applied to three critical missions of the CCHS Foundation:

  1. Seventy percent (70%) will be used to support CCHS research and hopefully lead to better treatment options beyond mechanical ventilation. Our renowned Research Advisory Board is ready and eager to disseminate grants using these funds. There is no available medication to treat CCHS, however we are encouraged that with adequate research this will soon change.
  2. Twenty percent (20%) will be applied to the education plan of the CCHS Network. This will allow for the continuation of national family conferences and international outreach. The Network has been a beacon of support and information for both CCHS families and researchers in the United States and abroad for 26+ years.
  3. Ten percent (10%) will be directed to the Ellen Coates Whisman Fund. Ellen was a CCHS mother and incredible advocate who lost her battle to cancer in August 2014. This Fund provides direct assistance to CCHS families in need.

Together, we can undo Ondine. CCHS is an orphan disease. For generations, funding to investigate causes and seed treatments has been extremely limited. Now that researchers have found ways forward, imagine the revolutionary leaps in science that that your tax-deductible gift will make possible.

 

Additional Resources

Please feel free to review the following documents for more information regarding the CCHS Foundation:

    1. Our one-page marketing brief can be kept for quick reference or distributed among interested parties.
    2. The 2016 CCHS Foundation Annual Report is located online for review.
    3. The 2015 CCHS Foundation Annual Report is also located online for review.

CCHS Foundation Advisory Board

 

Melinda Riccitelli, Foundation Co-Chair


Rebecca Martine, Foundation Co-Chair


Rachael Ballard


Marne Harvich-Chergi


Matt Kohnen


Wendy Stroup



Melinda Riccitelli, PhD, Foundation Co-Chair

organizer_riccitelli

Melinda Riccitelli has been an active member of the CCHS Network since 2008. Melinda’s daughter, Sarah, 27 years old, was diagnosed at birth with CCHS. Melinda accepted a CCHS Network Executive Board seat in 2011. In 2014, she took on the role of Co-chair of the CCHS Foundation, and most recently Melinda agreed to serve as Co-Principle Investigator of the CCHS Natural History Study, a longitudinal research project of CCHS funded by NORD, NIH, and FDA. Professionally, Melinda is a community college Biology professor, Human Physiology and Molecular Biology, and lives in San Diego, California.


Rebecca Martine, MSN, RN, PMHCNS, Foundation Co-Chair

organizer_martine

Rebecca Martine has served as the Co-Chair of the CCHS Foundation since its inception in 2014. Her youngest son, Luke, was diagnosed with CCHS shortly after birth in 2012 and received a tracheostomy at one month of age. Professionally, Rebecca is a Psychiatric/Mental Health Clinical Nurse Specialist who has specialized in Parkinson’s disease for over 15 years. Her area of expertise centers on disease education, outreach, and networking. Rebecca lives in Cherry Hill, NJ with her husband and three sons.


Rachael Ballard, Board Member

organizer_ballard

Rachael Ballard has served on the CCHS Board since 2015, shortly after the birth of her son Lincoln. Lincoln was born in December of 2014 and received his CCHS diagnosis and tracheostomy at one month of age, finally coming home after being in the NICU for two and a half months. Rachael is a professional fundraiser who has worked for non-profits in the Pacific Northwest and Texas for 10 years. She currently resides in Austin, TX with her husband Brandon and two children Flora and Lincoln.


Marne Harvich-Chergi, Board Member

organizer_chergi

Marne Harvich-Chergi is one of the founding board members of the CCHS Foundation. Her daughter Cassidy coded at birth and remained in the NICU until her diagnosis three months later. Marne is the President of Duval Tile and Decorating and handles all aspects of small business ownership. Her background includes studies in accounting, interior design and digital media at Florida State and University of Florida.


Matt Kohnen, Board Member

organizer_kohnen

Matt Kohnen has served on the CCHS Foundation Board since its creation in 2015, and has primarily worked with the Regional Coordinators. He works in Information Security for U.S. Bank and has two kids: Dayton (6) and Elise (4). Elise was diagnosed with CCHS at one month old and underwent a tracheotomy at 3 months old. Elise has since been decannulated and is ventilated via diaphragm pacing.


Wendy Stroup, Board Member

organizer_stroup

Wendy Stroup began serving on the Foundation board in 2016. Wendy’s daughter, Sadie, was born in January 2008 and was diagnosed with CCHS one month later. Wendy’s professional experience includes seven years as a product manager, specializing first in financial investment tools and later in consumer products. Wendy lives in Chandler, AZ with her husband and two children, Sadie and Deacon.

CCHSF Regional Coordinators

The following are a list of volunteers that assist the CCHS Foundation with local planning. If you are interested in joining the Foundation team please contact Melinda Riccitelli or Rebecca Martine.

  • Desiree Cougle, NJ
  • Rushell Crane, UT
  • Carissa Froyum-Roise, IA
  • Sarah Repicky-Yang, AL
  • Trisha Campbell, FL
  • Jose Bru, Mexico
  • Magda Hueckel, Poland
  • Tomasz Sliwinski, Poland
  • Jolene Kohnen, IL
  • Nico Meyering, NY
  • Suzanne McDaniel, GA
  • Aaren Eddington, CA
  • Candide Wakely, Canada
  • Crystal Lockhart, FL
  • Sandra Var-Godmar, TX

CCHSF Consultant:
Amanda Wertz McClellan, Social Media