Leadership team
Patient Leadership Board
Caregivers of 8p heroes that meet monthly and volunteer 5 hours or more per month to support the mission.
Mary van Meter
Mary van Meter
Mary lives in Oklahoma City, OK with her husband, Zach, and daughter, June. June was born in 2019, and at 22 months old after undergoing genetic testing was diagnosed with 8p Inverted Deletion/Duplication. After learning about Project 8p, Mary and Zach were thankful for the connection it brought through meeting other families and also wanted to get more involved to continue supporting and furthering the cause of research and progress for June’s diagnosis. Prior to becoming mom of June, Mary worked as a Child Life Specialist supporting children and families as they faced unexpected medical challenges. This has helped to shape the way she has taken on the role of parenting a child with an unexpected diagnosis and adapting to the new path her and her family are now on. In her spare time, Mary loves traveling, cooking, spending time with family and friends, and having endless dance parties with June.
Mary van Meter
Mary lives in Oklahoma City, OK with her husband, Zach, and daughter, June. June was born in 2019, and at 22 months old after undergoing genetic testing was diagnosed with 8p Inverted Deletion/Duplication. After learning about Project 8p, Mary and Zach were thankful for the connection it brought through meeting other families and also wanted to get more involved to continue supporting and furthering the cause of research and progress for June’s diagnosis. Prior to becoming mom of June, Mary worked as a Child Life Specialist supporting children and families as they faced unexpected medical challenges. This has helped to shape the way she has taken on the role of parenting a child with an unexpected diagnosis and adapting to the new path her and her family are now on. In her spare time, Mary loves traveling, cooking, spending time with family and friends, and having endless dance parties with June.
Mary van Meter
Kevin Hickey
Kevin Hickey
Kevin Hickey lives in Fort Worth, TX, with his wife, Jessica, and their two children Claire and Everett. Claire, born on Earth Day in April of 2017, was diagnosed in June 2018 with Inverted Deletion/Duplication of Chromosome 8p. From the early days of the news Kevin and Jessica have researched and been heavily involved in activities around Project 8p to help Claire and all others with her diagnosis live life to the fullest potential. Kevin works in Cybersecurity software sales and enjoys connecting with other families to help raise awareness and better understand the science and future care for all of those affected by rare disorders. In his spare time, he enjoys traveling to new places, hacking at golf, barbecuing, and of course laughing with Claire and Everett!Â
Talena van Sword
Talena hails from the great Pacific Northwest. She resides in Portland, Oregon with her husband and daughter. Her husband, Deacon, works in finance. Talena and Deacon’s daughter Delilah was born in March of 2021. She was diagnosed with 8p Inv Dup Del Syndrome and a uniparental monosomy 16 in February of 2022. Just like her name sounds. Delilah is utterly delightful.
Talena is a former fine dining line cook and still an aspiring chef. She’s a graduate of Oregon Culinary Institute and achieved a bachelors in Marketing from Portland State University. Although she has taken a pause from the professional kitchen. Her home kitchen is where you will always find her experimenting. Delilah loves watching her Mom cook. Delilah and Talena are two peas in a pod. They are learning and navigating what it means to be an 8p Hero and a Mother of an 8p Hero.
Participating in the Patient Leadership Board is an honor and a great privilege for Talena. An opportunity to grow her knowledge of 8p and serve the 8p community as a whole.
Amber Howland
Amber Howland
Amber Howland lives in Reno, NV with her husband and two children. Her daughter, Athena, was born in 2015 with 8p Inverted Deletion/Duplication. After learning about Project 8p and its mission to help all of the #8pheroes, Amber and her husband Edward volunteered to use their expertise to contribute. Amber has a BA in Communications and Geography and owns digital agency, Dragonfly Media. Through Dragonfly Media, Amber and her team support Project 8p as Awareness Chair. This includes management on the Project 8p website, social media, advertising and marketing. In addition, utilizing Athena’s blessings, they raise donations through the sale of Project 8p jewelry and charms.
Kaiti Syverson
Kaiti joined Project 8p in 2019, taking on the role of Family Support Chair. Her family lives in Alaska, where she also earned a B.A. in Elementary Education. Kaiti is the proud mom of Chloe, an 8p hero. She hopes to use her position at Project8p to unite families, provide invaluable resources, and continue growing the 8p community.
Fay Minty
Fay Minty
Fay Minty was inspired as a teenager in New Jersey to work in medical research so completed a degree in Medical Biochemistry (Glasgow University, Scotland) and PhD in Cancer Biology studying Telomeres in Normal Human Epidermal Keratinocytes at the Beatson Institute for Cancer Research (Glasgow University, Scotland). She then received a Ruth L. Kirschstein National Research Service Award to work in Dr James Rheinwald’s laboratory (Department of Dermatology, Harvard Skin Disease Research Centre) establishing protocols to differentiate human embryonic stem cells into keratinocytes (skin cells).
In 2010, Fay had her own 8p hero, Madison, and spent the next 6 years at home working with Speech and Language, Occupational and Physical Therapists to integrate their treatment strategies into Madison’s daily life during and in between music, dance, swimming, social occasions, and medical appointments. 50-hour weeks in the lab were a breeze compared to this new schedule with all its various challenges!
Fay returned to research in 2015, but now works in a supportive capacity as the Wellcome Trust PhD Programmes Manager at King’s College London managing both the Cell/Advanced Therapies for Regenerative Medicine and the Neuro-Immune Interactions in Health and Disease PhD Programmes.
As a member of the Parent Leadership Board – Fay aims to support with scientific communication, helping parents understand research in the 8p field and helping the wider scientific community understand the incredible resources available through Project 8p and how their contributions will change lives.
