Leadership team

Patient Leadership Board

Caregivers of 8p heroes that meet monthly and volunteer 5 hours or more per month to support the mission.

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.

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.

Will Norris

Being on the PLB allows me to directly contribute to advancing the mission of the organization. Bina has done a TON of work already that we have all benefited from immensely. PLB provides a venue for the rest of us to help spread some of this work & to scale up our collective efforts to improve the lives of our kids/loved ones impacted by 8P.I am both chair of the Research Committee (ResCom) and a member of the PLB. One of the first things that the ResCom is doing is cataloging our research objectives and prioritizing specific efforts. This will enable us to align resources against our most important needs.

I am a professor in the field of international affairs with previous experience in finance (hedge funds & private equity) and management consulting. I have also served on some non-profit and educational boards. Before kids, I used to have hobbies… I still do like to go fishing & have enjoyed getting the kids hooked on it too as they have gotten older.

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! 

Rose-Anne Partridge

Rose-Anne Partridge is a graduate of the University of Toronto, Canada and has been an entrepreneur for over 25 years. During that time, she became a mother to three beautiful children, however, her second-born son was born with a rare chromosomal disorder which led Rose-Anne down a path of research into holistic alternatives for his well-being. During her studies and research, she fell in love with many energy healing modalities, essential oils and everything she could find that pertained to brain health and nutrition which have all contributed to the healthier, happier lifestyle she lives today with her whole family.

Rose-Anne is a published, best-selling author, former radio show host and iTV personality. Her most recent work includes being the visionary and co-author of For the Love of Our Children – True Stories of Hope and Healing, working with families who have children with special needs and sharing their unique journeys. After her son was born with a rare genetic condition, she went on to become an advocate and wellness coach for special needs and eventually founded Real Life Changes, Families for HOPE Network, and Oily Masters. She has also created a guide on how to use essential oils and related products to help our special children live to their fullest potential.

You can obtain a copy of her latest book, For the Love of Our Children – True Stories of Hope and Healing. For every book sold, $5 will go toward helping to create a path to treatment for neurological chromosomal disorders by funding research and a standard of care.

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.

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.

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.

Emily Ungs

Emily Ungs lives in Waterloo, IA with her fiance, ShaVar, and their three children – ShaVar, SaMiyah, and SaMara. ShaVar (aka little ShaVar) was diagnosed in August of 2018 on 8p day with Deletion of Chromosome 8p. Emily works from home in Accounting for a Medical Revenue Cycling company. We thoroughly enjoy being a part of the PLB, bringing families together to collaborate and share their successes and struggles and working together to provide all 8p heroes with a full, fun, and functional way of life. In our free time we enjoy playing outside with our puppy, taking random weekend roadtrips, and watching (big) ShaVar play football!

The Project 8p Foundation (Project 8p) was created in 2018 to:

  • Accelerate future treatments, not only for 8p, but potentially for other chromosome-wide diseases as well.
  • Lead with knowledge from patients. Currently, there is no cure for 8p disorders, nor is there a standard course of treatment.

The Project 8p Foundation (Project 8p) was created in 2018 to:

  • Raise transformative funding for pioneering scientific research into treatments for a complex, rare disease involving 250+ affected genes on the short arm of the 8 th chromosome (8p). Rearrangements of these genes causes significant abnormalities to the entire neurological system, thus all organs and functions of the body– with variance in cognitive functions, gross motor skills, social development and other challenges during infancy, and throughout life;
  • Empower a unified community of 8p patients and their families so they can have meaningful lives today; and
  • Accelerate future treatments, not only for 8p, but potentially for other chromosome-wide diseases as well.