PEER COACHES

Some participants in WellCAST were assigned a Peer Coach that is a rare disorder caregivers themselves! These Peer Coaches would chat with participants over Zoom about their experiences in WellCAST four times throughout the study:
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  1. Beginning of treatment
  2. Middle of treatment
  3. End of treatment
  4. Follow-up a few weeks later
Carole Bakhos lives in Colorado with her husband and her 2 children (11 and 5). Her journey with rare started when her daughter was diagnosed with a rare genetic mutation in the gene PPP2R5D now known as Jordan’s Syndrome.

Carole is the Executive Director for Jordan’s Guardian Angels, the nonprofit leading research into Jordan’s Syndrome. Carole plays multiple roles to support and advocate for disabilities including founding 2villages, being a board member of Parent to Parent, and a support parent for families with disabilities.

​Carole advocates for systemic change and promotes inclusion, demonstrating a strong commitment to improving the lives of those affected by disabilities. In her spare time, she enjoys traveling with family, going on bike rides, audiobooks, and playing her classical guitar.
Jessica Howard, her husband Tom, their three teenage sons, and two rowdy dogs, live in Hilton Head Island, SC. Jessica’s rare disease journey began when her oldest son was diagnosed with Prader-Willi Syndrome (PWS) shortly after he was born in 2005.

​Over the years, Jessica and her family focused supporting medical research to find new treatments for PWS. She served as Board Chair of the Foundation for Prader-Willi Research and is now the Board Chair of the PWS Registry Advisory Board. A graduate of the University of Georgia, she worked in finance as a Corporate Sales Account Executive for several years before switching to being home with her sons full-time.

​In her spare time, she enjoys volunteering at school and traveling with her family. 
Tony King lives in Bear, Delaware with his wife and two sons, ages 10 and 16. He has a B.S in Biology/ Forensic Science from The University of South Carolina and an M.B.A from Webster University in St Louis, MO. Additionally he served seven years as an officer in the US Army.

​Tony cares for his eldest son who has a rare genetic neuromuscular disorder called CTNNB1 Syndrome. Tony is currently serving on the board of CTNNB1 Connect and Cure and is responsible for a number of projects including discovering grants, research and other fundraising opportunities for CTNNB1 Connect and Cure. Tony has represented the CTNNB1 community on the Simons Searchlight Community Advisory Board since 2019.

​Additionally, Tony is a CrossFit Coach and works with adaptive athletes to improve their activities of daily living (ADLs).  
Emily Lemke crashed into motherhood with a months-long NICU stay after her daughter was born. In order to provide the best care, she left her career as a mental health clinician to become a full-time caregiver. After months of specialist appointments and therapies, her daughter was finally diagnosed with Koolen-de Vries Syndrome (KdVS).

Emily serves on the board for the Koolen-de Vries Syndrome Foundation. She recently co-chaired the bi-annual Patient Advocacy Summit which had nearly 400 people in attendance, including families, doctors, and researchers. Emily also hosts a monthly KdVS Foundation Connect series on Zoom, where families from around the world can connect to discuss and learn from each other about their experience with KdVS. Emily is passionate about supporting families and caregivers who are impacted by rare disease and providing emotional support to this community.  
 
Emily founded Tiny Tubie Shop in 2018, an online marketplace providing support for medically-complex and tube-fed families. She then went on to create The Caregiver Compass, an all-in-one organizer notebook for keeping track of the ever-changing and complicated needs of a loved one with medical complexities. Emily's goal is to empower caregivers and parents to feel more comfortable and confident in their medically-complex caregiving journey, while taking time to care for themselves as well. 
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In her free time, Emily enjoys sewing, perfecting homemade pizzas and the perfect cup of tea, and exploring new cities and national parks. She lives in Maryland with her husband and daughter.  
Jennifer Martinez lives just outside of Albuquerque, New Mexico with her husband Ben, and six of their children. In total, their blended family includes nine children.

Her caregiving journey started six years ago when their son, Benjamin was born. After a two year diagnostic odyssey, they discovered that Benjamin has ATR-X Syndrome. ATR-X Syndrome is a monogenic, neurodevelopmental condition that affects many systems in the body. Jennifer and Ben are co-founders of the ATRX Research Alliance (ARA), a non-profit organization that drives medical research forward in search of treatments while advocating for the patient community.
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Jennifer holds degrees in Finance and Business Administration, with a certification in Human Resources. With a history of driving high performing teams, she has a background in sales, leadership, and partner alliance management, and utilizes these skills to cultivate meaningful partnerships with key stakeholders and drive ARA’s mission forward to benefit the patient community.

Jennifer loves spending time with her family, and enjoys kickboxing, hiking, fishing, and singing. 
Caroline Menzia lives in Tacoma, WA with her husband, their super silly and smart (almost) 5-year-old, and one very high maintenance German Shepherd.

Caroline's rare disease journey began when her son was diagnosed with Infantile Spasms and FOXG1 Syndrome in 2020 at just a few months old. Before staying home with her son, Caroline was a school counselor for many years and loves using the skills gained throughout her career when supporting others in the rare disease community.

​One way Caroline does this is as the new member coordinator for the FOXG1 Research Foundation. In her spare time, she enjoys going for walks and relaxing by the water, spending time with family, and a good glass of rosé. 
Jennifer Paige lives in Southern California with her two young adult sons. She became involved with advocacy and support for people with Prader-Willi Syndrome (PWS) when her oldest son was diagnosed in the NICU, at six weeks old.

Jennifer served as a past Board President for the Prader-Willi California Foundation and currently volunteers for PWCF by hosting online social chat groups for teens and adults diagnosed with PWS. She works as a consultant specializing in crisis services, adult supports, and the Regional Center system. Jennifer understands the extraordinary emotional, physical, and logistical demands that parent caregivers face daily.

​She believes that self-care is fundamental to her parenting journey and “walks the walk” (literally) on beautiful hiking trails around the world. 
Katlyn Peek is a wife, mother of two, and all-around chaos coordinator of her home. She lives on the Alabama Gulf Coast where she is a yoga instructor and substitute teacher.

She is an autism advocate as well as an autism parent representative for the Regional Autism Network of Alabama. Her journey as a special needs caregiver started when her son was diagnosed with Autism Spectrum Disorder & Dup 7 in mid to late 2018.

​She discovered her passion for helping other special needs caregivers during the 2020 pandemic. She uses her yoga practice for not only herself to destress but to give other caregivers the space to decompress from the many stressors of their day.

​She believes that self-care as a rare genetics' caregiver is not just a suggestion but a priority that needs to be fulfilled. Afterall, you cannot pour from an empty cup.