Board Members

President - Meghan Fido

Professional Biography

Meghan Fido has worked in the field of education for the last 23 years. She is National Board Certified in Early Childhood Education with a Masters Degree in Curriculum and Instructions specializing in Mathematics. Endorsements include English Language, Algebra, and Special Education. Currently she serves as an Assistant Principal for Chicago Public Schools. She has held this role for the last 10 years and worked in many areas of the city. She has also served on committees to support a positive school culture and maintains connections to the community by engaging in and organizing school wide events.

Personal Statement 

“I am a proud mom of two young children (8 and 10) with PKU. I thrive on being involved in their activities and interests. I believe in teaching children how to be responsible and advocate for themselves and others. I am passionate about public service and engage in opportunities that support my desire to enhance the lives of others.” 

Vice President - Kirsten Frankfort

Kirsten Frankfort, MSN, RN, CNL, B.S. Computer Science, is a Master’s prepared Registered Nurse and also holds a Bachelors Degree in Computer Science. Kirsten brings technical skills around digital platforms, branding, marketing, and content creation through her many years of experience as a software developer and online parenting platform, Bump to Baby and Beyond. She previously worked as a registered nurse in the Lurie Children’s Hospital Neonatal ICU where she grew her passion for advocacy through her care of many rare conditions and acute care needs of infants. Kirsten has expanded her philanthropic efforts and is a fierce advocate for PKU forming her own 501c(3) – The Frankfort Family Foundation for PKU, sits on the NPKUA Fundraising Committee, and an active host committee member for the Lifting the Limits for PKU Chicago Gala. As the outreach officer and editor-in-chief for ‘The PKU Press’, Kirsten hopes to personally connect with the local community by sharing ideas, stories, recipes, and tips and tricks that make daily life with PKU a little smoother. 

Personal Statement:

“I am a proud mom of four young children (also a twin mom!) and my two sons have PKU. Beyond my skills and experience, my passion is fueled by my two boys I see both struggle and thrive with this rare disease and believe no person should have to live in fear that what they eat could cause irreversible brain damage or have to manage lifelong complex diets and regiments. I am humbled and honored to broaden my impact in the PKU community at both the local and national levels. I feel the incredible effects these advocacy and fundraising efforts have on not only my sons’ future but the entire PKU community. It has been very rewarding to be a part of it.”

Treasurer - Donna Pfeil  

Professional Biography 

Donna Pfeil is a retired technology and security professional with years of collective experience in Information Technology, Information Security, Audit, Business Continuity, Finance and Accounting, Project Management, Vendor Management, Non-Profits, Grants Management and Risk Management.  

Personal comment  

“I am a Mom to three very accomplished adult children and a dog. I am a Grandmother to five beautiful grandchildren. Two of my grandchildren have PKU.  I have a strong desire to contribute in any way possible to secure and enhance their future and the future of others living with PKU.”

 

 

NPKUA Rep - Soo Shim

Soo Shim MS, MBA. LCSW is a clinical social worker currently employed at Ann & Robert H. Lurie Hospital in the Division of Genetics, Genomics and Metabolism. Soo is currently on the NPKUA National Alliance Board, The PKU of Illinois Board and joined the NPKUA Scientific Board this year. Soo is a recipient of the Social Work Leader of the Year Award in 2014 by the SSWHLC Illinois Chapter. In addition to her clinical role, Soo is an adjunct Professor at the University of Chicago. Mrs. Shim received her graduate Master of Social Work degree from Columbia in New York and undergraduate degree B.S in Psychology from Washington University in St. Louis.

Thank you for allowing me to serve on the PKU of Illinois Board. It is truly a joy.

 

 

PKU Ambassador for Illinois - Mary Lonski 

Mary Lonski has been an ambassador of PKU Organization of IL for longer than many can remember, as she is the first PKU patient in the state of Illinois! She works diligently to support the organization by bringing joy through her newsletters and making ribbons to sell at events. All proceeds go directly back to research. Mary loves fashion, has a heart of gold, and celebrates her birthday with us every year at the Annual Meeting.

 

 

 

Outreach: Kirsten Frankfort

Lurie Children's Liaison - Anne Kozek

Anne Kozek is a metabolic dietitian at the Ann & Robert H. Lurie Children’s Hospital of Chicago. She holds a Master of Science degree in Nutrition and Dietetics. Her career as a metabolic RD started at the University of IL at Chicago helping those families for about 18 years. From there she joined Early Intervention teams in IL and FL. While in Early Intervention she participated in courses that allowed her to become a trained feeding therapist. The last 4.5 years she has married her love of metabolic nutrition and feeding therapy helping the families of Lurie Children’s Hospital.  

 

 

Secretary & Cooking Lead - Kimberly Gralen

I graduated from U of Illinois law school, and worked in defense of personal injury cases for 7 years before retiring to stay home to raise our three kids (Matt, age 36; Bridget, age 34, and Claire, age 33) through PKU and juvenile rheumatoid arthritis. My husband and I have long devoted ourselves to helping the PKU community, serving in the state and national levels. My current position is chairing cooking events at the local level.


 

 

 

Jill Chertow - Board Member

Jill Chertow is the Founder and President of the Propionic Acidemia Foundation. Tragically, her younger child passed away at the age of 16 in 2016 due to complications from Propionic Acidemia (PA). Jill holds a Bachelor of Science in Business Administration from the University of Illinois at Urbana-Champaign. She has co-authored peer-reviewed articles on PA and has spoken at several rare disease conferences.

 

 

 

 

Camp lead - Pam Kowalczyk

Vendor Relations - Danae Bartke

Diagnosed at the age of 10 with Classical HCU, Danae' struggled with the low-protein diet and formula. At 24 years old, she suffered a blood clot, which was the catalyst that she needed to get back on track and seek community support. She first connected with the PKU Community and became involved and eventually the president of the PKU Organization of Illinois (2016-2017). After feeling inspired by the larger low-protein community, in 2016, she co-founded HCU Network America. She speaks openly about dealing with her history of symptoms, which include anxiety, depression, OCD, aggression outbursts, ADD, sensory issues, scoliosis, osteopenia, lens dislocation, and, of course, her blood clot, in hopes it will help others feel seen in their journey.

Camp Co-Lead - Danae Bartke

Committee member - Clarissa Bontrager

Committee member - Grant Smith

Grant Smith is an at large board member of PKU Illinois. Grant has participated on the board for the last 12 years, with roles ranging from head of social media to holding officer positions of Vice President and President of the board. Grant has a 13 year old son with PKU. Grant lives with his wife and four children in the northern suburbs of Chicago.

 

 

 

Clinic Liaison - Anne Kozek

Illinois Ambassador - Mary Lonski

Welcoming Team (New Parents) - Amy Baiocchi, Danae Bartke

Fundraising - Clare Bontrager, Kimberly Gralen, Amy Baiocchi

Camp - Danae Bartke & Pam Kowalczyk

At Large - Grant Smith, Jill Chertow

NPKUA Liason - Soo Shi