Patient and Family Advisory Council

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Our Commitment to Patient-centered Research

The GIC is committed to patient-centered research. We have established a Patient and Family Advisory Council (PFAC), a group of diverse patients and family members from participating institutions of the GIC. The purpose of the PFAC is to incorporate the patient and family perspectives into our research activities. We value the insight, background and experiences of our patients, families and communities. We strive for an inclusive environment where all PFAC partners feel empowered to participate. Our patients' and families' voices are integral to our work. The PFAC helps provide input on patient-facing communications, ideas for general and diversity recruitment into institutional biobanks, improving transparency with patients and families, and on protocols and studies. The PFAC convenes monthly with the GIC. 

Our Partners

Rachel Honore, Children's Hospital of Philadelphia

Bill O’Donnell, Boston Children's Hospital

Teresa Johnson, St. Louis Children's Hospital

Kristen Groseclose,  Cincinnati Children's Hospital

Jon Nelson, Children's Hospital of Philadelphia

Scott Fehr, St. Louis Children's Hospital

Kallie McDaniel, Cincinnati Children's Hospital

Maria Leary, Children's Hospital of Philadelphia

Mikiyah Butler, Cincinnati Children's

Erin Poirier, Boston Children's Hospital

Maria Conley, St. Louis Children's Hospital

Kyle Fehr, St. Louis Children's Hospital

Rachel Leah Honore, Parent, Children's Hospital of Philadelphia

Rachel is the proud mother of an energetic 9 yr. old boy who was diagnosed with Autism Spectrum Disorder, delayed learning and Attention Deficit Hyperactivity Disorder. Rachel refers to herself as the "unlikely advocate" and credits the genesis of her journey to advocating for her son which quickly evolved into educating, empowering and mentoring other parents and guardians.

Kristen Groseclose, Parent, Cincinnati Children's 

Kristen Groseclose received her BA in German from Penn State and her MAT in German from Indiana University. She is the parent of a child diagnosed with Smith-Kingsmore syndrome and is the president of Smith-Kingsmore Syndrome Foundation, a nonprofit dedicated to advancing medical research for this rare genetic condition.

Kallie McDaniel, Parent, Cincinnati Children's 

Kallie McDaniel is from Maineville, OH, which is near Cincinnati. Her son, Kirill, has a rare form of  dwarfism called Diastrophic Dysplasia and through the process of his diagnosis, she started to learn the importance of genetic research.

Erin Poirier, Parent, Boston Children's Hospital 

Erin Poirier is a wife and mother of two daughters, Lily and Elise. At very young ages, both girls presented with developmental delays, physical delays, and epilepsy, and were also non-verbal. For many years Lily and Elise were considered “mysteries” to their team in the Neurology Department at Boston Children’s. After 6½ years of searching, both girls were diagnosed with a rare genetic condition called SYNGAP1. Currently, Lily and Elise are two out of 750 individuals in the world with this diagnosis and only the second known sibling set. Erin and her husband, Andrew, are grateful for both the expertise and persistence of their Boston Children’s team for finding the answer to their question of “why?”

William (Bill) O'Donnell, Parent, Boston Children's Hospital

Bill lives in Medford, Massachusetts, with his wife and daughter, Shannon. Shannon was diagnosed with idiopathic pulmonary hypertension in 2001 and has been a patient at Boston Children’s Hospital ever since.  Bill joined the Boston Children’s Hospital Family Advisory Council in 2012.  He served for eight years and is currently an emeritus member of the council. There is no cure for Shannon’s illness and the cause is unknown.  Genetic research has establish a cause in some individuals with PH.  Bill is hopeful more genetic research will lead to establishing a cause, further treatments and a cure for his daughter’s illness.

Jonathan Nelson, Parent, Children's Hospital of Philadelphia

Jonathan Nelson is a married (26 years) father of two children living with Sickle Cell Disease. I am also retired Marine 20 yrs and currently work as a Logistics Manager for Foreign Military customer (CZECH REPUBLIC). He is currently a special advisor and former president of the Sickle Cell Parents Network at Children’s Hospital of Philadelphia. He has also done volunteer work at shelters doing life skills training and worked as fitness trainer 15 years at YMCA doing Kids Movement Classes.

Maria Leary, Parent, Children's Hospital of Philadelphia

Maria Leary is a graduate of Bloomsburg University of Pennsylvania where she earned a BA in Fine Art. After building a career in the printing and advertising industry, her focus and purpose changed when she became the mother of two boys dually diagnosed with autism and a rare genetic disorder. Her experiences as a parent have inspired her advocacy efforts, which focus on bringing awareness to the needs of individuals who display severe and challenging behavior, especially those who are considered complex, and their families. Maria is a 2016-2017 graduate of the New Jersey Partners in Policymaking Program, a 2017-2018 graduate of the New Jersey Leadership Education in Neurodevelopmental and Related Disabilities (NJLEND) Program, and a 2019-2020 graduate of the LEND Program at Children’s Hospital of Philadelphia. As a private consultant in the disability field, Maria currently works as the NJLEND Alumni Coordinator for The Boggs Center on Developmental Disabilities, and as a Special Project Consultant for the New Jersey Council on Developmental Disabilities. In addition to volunteering on several county and state committees related to disability, Maria serves as Secretary of the Board of Trustees of Autism New Jersey. She previously served as a Board Member at Large for The Arc of Warren County.

 

Maria Conley, Parent, St. Louis Children's Hospital

Maria Conley is a mom to 2 children, 10 year old Charlie and 8 year old Willa. She was born In Santiago Chile, was adopted at age 3 and was raised in suburbs outside of St. Louis, MO.  She chose to go to school in NYC for collage for a number of reasons, a big one being to be find a larger Hispanic/Latin Community where she would be able to fit in more and grow as a young Latin person. She met and married her husband there, and they had their children there.  When Willa was 5 months old she was diagnosed with Williams syndrome .They began their medical journey with her at Mount Sinai and worked with the WS Clinic at Montefiore Hospital. In 2015, they moved from NYC to St. Louis to be closer to family and for the better schools in St. Louis for both of her children. Currently Maria works as a Family Partner at St. Louis Children’s Hospital and her daughter is seen in the WS clinic there as well.

Teresa Johnson, Parent, St. Louis Children's Hospital

Teresa Johnson lives in Missouri.  She is a mom of three amazing kiddos.  Her middle child was born with Down syndrome and a multitude of medical diagnoses including chronic lung disease, pulmonary hypertension, and congenital heart defects.  She joined the GIC to help give a voice for parents and support work towards increasing knowledge on unique health diagnoses to help create better outcomes for our children’s futures. 

Kyle Fehr, Patient, St. Louis Children's Hospital

Fascinated by space and with a love of building things, Kyle Fehr is pursuing a career in Aerospace Engineering. He was born with Greig Cephalopolysyndactyly, causing webbing of both the hands and feet. After participating in the Human Genome Project, Kyle went through various corrective surgeries at St. Louis Children's Hospital. A St. Louis native, Kyle was captain of his high school's robotics team and played in the jazz band. Currently studying at the University of Alabama in Huntsville, Kyle is on the rocket team of the Space Hardware Club. In his free time, he enjoys being outside, driving, tinkering, and spending time with family and friends.

Scott Fehr, Parent, St. Louis Children's Hospital

Since college Scott has worked in “Business” theater for more than 18 years; starting on the loading dock at Anheuser-Busch, he evolved designing major productions for 600 to 60,000 people and ultimately producing and directing $3 million business sessions.  After 10+ years in the agency world Scott is now leading the experience design and production team at large health care company. Following his passion for family advocacy in health care, Scott has served in numerous capacities at St. Louis Children's Hospital including the Patient and Family Centered Care committee, Children’s Advisory Network, Perioperative Management Team, and the Patient Care Committee of the Board of Trustees.

Testimonials

"I can’t believe something like this didn’t already exist!"

Scott Fehr, Parent, St. Louis Children's Hospital

"The GIC will help achieve the ultimate goal of personalized targeted medicine for affected populations."

Kristen Groseclose, Cincinnati Children's

"In just the first couple of meetings it has become clear that the GIC is set up to listen to its partners.  We are not just a 'rubber stamp'. I am also intrigued with the potential of genetics establishing a  reason for a rare illness and then how that information can lead to a cure."

Bill O'Donnell, Parent, Boston Children's Hospital

"The GIC is such a great thing that will help so many children with genetic disorders get care quicker and allow for doctors and families to have a greater understanding. I’m excited to be a part of something that will change the future of genetics and help so many people."

Kallie McDaniel, Parent, Cincinnati Children's

"The GIC will help children and families in the future get faster diagnosis which can lead to better therapies and effective medications for child with genetic issues or syndromes."

Maria Conley, Parent, St. Louis Children's Hospital

"The GIC is a safe space for data to live and be available for current and future research. I am looking forward to watching GIC grow. I believe it will be incredibly useful and discoveries and history will be made!"

 

Erin Poirier, Parent, Boston Children's Hospital

"The GIC website will be very beneficial to patient families as it will provide more in-depth information as it relates to research. Families may become educated on what gene therapy is and the benefits not only for their family but other families as well. The information contained in the website will allow families a chance to feel more comfortable with regards to data sharing and privacy.”

Jon Nelson, Parent, Children's Hospital of Philadelphia

“The GIC is crucial to performing research on a global scale. Factors, like race, that were previously overlooked are now included and considered in research. Particularly, people with Sick Cell Anemia have an opportunity to be part of this. Researchers are now going to look at my community that has been overlooked. We want to see the research breakthroughs that will be achieved. I’m thrilled to be included in this.  When you’re included, it makes a world of difference.”

 Rachel Honore, Parent, Children's Hospital of Philadelphia