Taylor Kane, Founder & Executive Director

Taylor’s activism began as a pre-teen, shortly after her father died from the rare X-linked condition adrenoleukodystrophy (ALD) and she learned that she was a carrier of this devastating disease. Not only did Taylor help raise more than $250,000 for ALD research, she successfully lobbied the New Jersey legislature and Governor to enact a law requiring the screening of newborns for ALD in New Jersey, as treatment is significantly more effective if the disease is diagnosed before the onset of symptoms. In 2012, Taylor founded a campaign called YAC (Young ALD Carriers) to support young females who carry the gene for ALD and to assist them in effectuating positive change through advocacy, social media, and the legislative process. A summa cum laude graduate of The George Washington University, Taylor is an award-winning activist, an accomplished speaker, and a respected author, having published a memoir, Rare Like Us: From Losing My Dad to Finding Myself in a Family Plagued by Genetic Disease.

Florian Eichler, MD

Dr. Eichler is an Associate Professor of Neurology at Massachusetts General Hospital (MGH) and Harvard Medical School. His career has been dedicated to advancing the care and treatment for devastating neurogenetic conditions. Following neurogenetics training at Johns Hopkins with the late Dr. Hugo Moser and residency in pediatric neurology at MGH, he became the Director of the Leukodystrophy Service that cares for patients with an increasing variety of neurogenetic conditions. Dr. Eichler runs a laboratory at MGH that explores the relationship of mutant genes to specific biochemical defects and their contribution to neurodegeneration. To develop novel treatments, his laboratory assesses the consequences of gain or loss of function due to disease causing genes. In 2009 the laboratory identified two neurotoxic desoxysphingoid bases that accumulate in mutant transgenic mice and humans with HSAN1. For this work Dr. Eichler received the Wolfe Neuropathy Research Prize from the American Neurological Association. This has further led to a first clinical trial of substrate supplementation therapy for patients with HSAN1. In 2015, he became Director of the Center for Rare Neurological Diseases at MGH. The Center aims to eradicate rare disorders of the nervous system by leveraging the power of biological insights towards design and implementation of clinical trials. Dr. Eichler is the principal investigator of several NIH-funded studies on neurogenetic disorders as well as a gene therapy trial of adrenoleukodystrophy that recently reported on first successful outcomes in the New England Journal of Medicine. For this work, he received the Martin Research Prize from MGH and the Herbert Pardes Clinical Excellence Award from the Clinical Research Forum. Dr. Eichler also serves as chair of the Rare Disease Think Tank at MGH and is founder and president of the international consortium ALD Connect, a patient powered research network that is dedicated to curing adrenoleukodystrophy. For the past year he has served as chair of the Scientific Committee for the European Leukodystrophy Association.

Robert F. Sidonio, Jr., MD, MSc.

Dr. Sidonio is the Director of Hemostasis and Thrombosis Clinical Operations and Clinical Research at Children’s Healthcare of Atlanta and Emory University. He attended medical school at the University of Alabama at Birmingham School of Medicine and completed his residency at the University of Louisville/Kosair Children’s Hospital in Louisville, Kentucky. He was a fellow at the University of Pittsburgh Medical Center/Children’s Hospital of Pittsburgh, where he also received his Master of Science in clinical research. He is the PI of multiple national projects focused on hemostasis including the Emicizumab PUPs and Nuwiq ITI, Wilate prophylaxis, (Wil-29, Wil-31), ATHN 9 (von Willebrand disease) and MOTIVATE studies. Dr. Sidonio and his wife live in Atlanta with their two young boys.

Rebecca Spencer, MD, PhD

Dr. Spencer is an anesthesiologist at Concord Hospital in New Hampshire. She received an M.D./Ph.D. from Harvard Medical School and completed a surgical internship at Brigham and Women’s Hospital in Boston, as well as anesthesia residency at Massachusetts General Hospital. Her Ph.D. research focus was genetics, specifically in the area of skewed X Chromosome Inactivation, which may cause symptoms of X-linked diseases in some women. She currently serves as the High Risk OB Anesthesia Liaison at Concord Hospital. For her clinical work, she cares for all kinds of patients, but has a particular interest in patients facing genetic disorders.

Dr. Kimberly Zahm, Ph.D

Dr. Zahm is a Maryland-based licensed psychologist in private practice. She received her MA and PhD from the University of Minnesota, completing a doctoral internship at Towson University and a postdoctoral fellowship at the University of Delaware. She has been engaged in clinical work, training, research, and supervision with genetic counselors over a period of 17 years. For several years, she served in a leadership role in which she was responsible for running a clinical training program for emerging mental health professionals.

She has conducted workshops and trainings on mental health to genetic counselors throughout the Mid-Atlantic and the Northeast on such topic as psychosocial assessment, professional development over the career lifespan for genetic counselors, and best practices in providing clinical supervision.

She enjoys seeing a wide range of clients’ (identities and presenting concerns) in her current clinical work, including clients dealing with decision-making and emotional/mental health needs related to genetic disorders/diagnoses of self and loved ones. Other primary clinical foci include helping clients address anxiety, depression, relationship concerns, self-compassion/mindfulness, and perinatal mental health concerns (she is credentialed as a PMH-C).

Patrick Long, MD

Dr. Long attended medical school at the University of Cincinnati College of Medicine and completed a Family Medicine residency at the Detroit Medical Center and a Medical Genetics residency at the University of Colorado School of Medicine. His fellowship in Medical Biochemical Genetics was completed at the Children’s Hospital of Colorado. Patrick currently lives in Denver and specializes in the diagnosis and management of genetic disorders and inborn errors of metabolism in adults.”

Julie Cohen, ScM, CGC

Julie Cohen, ScM, CGC is a senior genetic counselor at the Kennedy Krieger Institute in Baltimore Maryland. She has over 10 years’ experience and specializes in genetic counseling for patients and families affected by leukodystrophy, muscular dystrophy, and other neurogenetic disorders and developmental disabilities. Julie received her Master’s degree from the Johns Hopkins/National Human Genome Research Institute Genetic Counseling Training Program. Julie is a member of the National Society of Genetic Counselors and is certified by the American Board of Genetic Counseling.

Rebecca McClellan, MGC, CGC

Rebecca McClellan, MGC, CGC is a board-certified genetic counselor who splits her time between the Neurogenetics-Metabolism Clinic at Kennedy Krieger Institute and the Johns Hopkins Center for Inherited Heart Diseases. For more than 20 years at she has supported patients and families with a wide spectrum of neurodevelopmental disabilities at Kennedy Krieger Institute and has specialized in mitochondrial and other rare metabolic conditions. In her role with the Center for Inherited Heart Disease, Rebecca works primarily with adult and pediatric patients with inherited arrhythmia conditions or congenital heart defects, and families impacted by sudden cardiac arrest and death. Rebecca also actively works to enhance family support resources by working closely with organizations such as the Barth Syndrome Foundation and SADS Foundation, and serves on the medical advisory board of
Remember the Girls a support organization focused on carrier issues, and the Timothy Syndrome Foundation.

Jamie Kostialik, MS, CGC

Jamie Kostialik, MS, CGC is a board-certified genetic counselor at Myriad Women’s Health. Jamie has spent the majority of her career focused on increasing access to expanded carrier screening, noninvasive prenatal screening, and hereditary cancer screening, while championing how crucial the voice of advocacy organizations and patient advocates is in policymaking pertaining to access to genetic testing. She also has experience as a metabolic genetic counselor at CHOC Children’s Hospital and a prenatal genetic counselor with Integrated Genetics. Jamie received her master’s degree from the University of California, Irvine. She is a member of the National Society of Genetic Counselors and is certified by the American Board of Genetic Counseling.

Amy Price, Chair

Amy’s academic and professional background in community psychology and public health translated naturally into her work in patient engagement and advocacy following a rare disease diagnosis in her children. With over 15 years of experience in the space including supporting patient organizations, industry consulting, and industry roles, she is dedicated to ensuring the perspectives and experiences of those impacted by rare disease as patients, caregivers and carriers, are included in the drug development processes. Her previous experiences on non-profit boards, addressing health equity in public health, and supporting X-linked communities lends itself to her role as the Remember the Girls board chair. Amy is currently the Director of Patient Advocacy at Rocket Pharmaceuticals and held the same role previously at REGENEXBIO. She holds a Masters in Community Psychology from Wichita State University and resides in Denver, Colorado with her family.

Lynsey Chediak, Treasurer

Lynsey has spent her career at the nexus of global partnership building, policy development, and nonprofit management aimed at one goal: filling unmet medical need for women and children.

Currently, she is the Associate Director of Strategic Development at Medicines360, the first nonprofit pharmaceutical organization in the US, where she helps resource and bring to market new innovative health products for women. Previously, she was Head of Partnerships & Impact at Rarebase, a public benefit corporation developing therapeutics for the hundreds of millions of children living with rare diseases without treatment options. She also formerly helped lead the inaugural precision medicine portfolio at the World Economic Forum, driving forward public-private partnerships to improve the future of global health and healthcare delivery. Earlier in her career, she was the Founder and CEO of a patient advocacy non-profit and a health policy advisor in the United Kingdom’s Parliament, House of Commons and California Governor’s Office. She was one of 100 entrepreneurs selected from across the USA for the prestigious Venture for America fellowship. Lynsey holds a BA from Claremont McKenna College; MSc from the London School of Economics and Political Science.

Lynsey is a lifelong rare disease patient who continues to battle against a genetic bone and joint disease called arthrogryposis. Thanks to an exploratory treatment that worked when she was 15 years old, she has been enjoying the gift of walking for almost two decades. She’s excited to contribute to the important work underway at Remember the Girls.

Amy Aikins

Amy is the Director, Government and Social Programs at Little Hercules Foundation, a non-profit organization based in Columbus, OH that has a focus on serving the Duchenne Muscular Dystrophy (DMD) and greater rare disease community. She has spent her professional life working in various capacities within both public and private non-profit organizations focused on serving individuals with disabilities. Amy is a genetic carrier of DMD and her only child, Elijah, was diagnosed with DMD at the age of four. She has been impacted by Duchenne throughout her life, having survived the loss of both her brother and a cousin to the disease.

Amy has a passion for helping people obtain access to the things that they need and has extensive experience with coordinating community supports, locating and arranging necessary paid services, and navigating public benefits. In her current role, Amy tackles access issues through engagement with stakeholders and involvement in various groups and projects focused on access issues within the rare disease community. She also works directly with individuals and families to address individual access concerns.

Emma Bliss, Director of Programs

Emma Bliss found out she was a genetic carrier for a rare neuromuscular X-linked condition, myotubular myopathy, the unfortunate way that many other women find out about their X-linked carrier status—by giving birth to a son with the affected disorder. She is a mother to a healthy boy born in 2014 and was looking forward to welcoming his baby brother into the world in November 2017. After a perfect pregnancy, standard genetic testing included, Caleb Bliss was born into the world severely affected by this condition. After getting the results back from a whole exome genetic sequencing test, it was confirmed that Caleb received a mutated MTM1 gene from his mother. Caleb lived a beautiful and peaceful short 5 months and 1 day in the NICU. Her family has found peace and healing in knowing he never felt pain or discomfort.

From this loss and from the knowledge we now have, Emma has a new purpose. X-linked conditions are more common than most know, genetics is such a confusing area of medicine and one we don’t have all the answers to, but advocacy and awareness are so important. For all the babies born, male and female, for all those affected with these diseases and absolutely for the women carriers, we must stand strong together.

Jessica Branum

My name is Jessica and I am a carrier of MECP2 Duplication Syndrome. I received my diagnosis shortly after learning that my son was affected. This was a shock as we had no family history of this condition. I’ve been heavily involved in advocacy since then, and love to spread awareness. I currently live in AZ with my husband, son, and 2 cats. We are currently doing IVF in hopes of having more children.

Liz Kennerley

Liz Kennerley began her federal health policy advocacy roughly seven years ago, during the United Mitochondrial Disease Foundation’s (UMDF) first Day on the Hill. During Liz’s time as a BIO consultant, she helped with UMDF guidance. She spoke during at least one session during three consecutive BIO Conventions, the world’s largest biotech gathering.

While not yet called upon, she is a mitochondrial disease DoD Congressional Directed Medical Research Program consumer peer-reviewer. She is also part of the EveryLife Foundation For Rare Diseases’ Community Congress. Lastly, Liz is a proud member of Young Adults of RDLA Representatives (YARR). This group is part of EveryLife that helps young adults with rare diseases gain a foothold in patient advocacy.

Liz graduated from Simmons University in 2009.

Throughout her advocacy efforts, Liz has received numerous awards. Three years ago, she won the UMDF’s peer-nominated Energy Award for embodying the organizations’ spirit by “promoting scientific discovery, research and education for the diagnosis, treatment, and cure of mitochondrial disorders and to provide support to affected individuals and families.

Jennifer Krafchik

Jennifer Krafchik is the Deputy Director for the National Woman’s Party at the Belmont-Paul Women’s Equality National Monument. In October 2018, she lost her uncle, Mike, and her brother, Geoffrey, to conditions resulting from their shared disease, Adrenomyeloneuropathy (AMN). It was after their deaths that Jennifer was led to the important work of Remember the Girls and the world of rare disease and patient advocacy. Although Jennifer is not a carrier of the ALD, her mother and sister are both carriers and it is very possible her nieces may be carriers of the disease.

Jennifer has been a women’s rights activist for more than 15 years and is now evolving that focus to women’s rights in healthcare. She is taking the time to learn as much as possible about X-linked diseases and aiming to find ways to honor the memory of her brother and uncle through action. She hopes to use her personal and professional experience to educate, raise money for, and advocate for patients with rare diseases.

Jennifer loves all things women’s history and encourages her bold and spirited 9-year old daughter, Eleanor Cady, to explore history with all of its nuances and complications. Jennifer is a voracious reader, loves Buffy the Vampire Slayer, The West Wing, and Gilmore Girls, and spends as much time as possible with her husband, Doug, her daughter, and the rest of her family.

Kristy McCracken

Kristy McCracken is an advocate and patient of a X-linked disorder in the Urea cycle disorder family. My official diagnosis is Ornithine Transcarbamylase deficiency commonly referred to as OTC. I am a member of many patient organizations for ucd and rare diseases. My biggest passion is being a mentor for those newly diagnosed or going through their own journey. I have spoken at many conferences and webinars, offering my experience and transitioning from pediatrics to adult care. I have been diagnosed for over 30 years now. I am also an adoptive mother. I am very open with my experience with reproduction journey and adoption. My goal is to never make someone feel alone in this journey of rare disease.

Samantha Coover

Samantha found out she was a carrier of the X-linked disorder Fragile X Syndrome in April of 2020 after her son was diagnosed at 16 months old. Her son is the first in her extended family to show signs of the syndrome and Samantha helped to unravel the genetic inheritance pattern. Samantha, her mother, and maternal grandmother all tested positive as carriers of Fragile X. She connected with Remember The Girls after learning that her diagnosis of “unexplained infertility” was actually a common symptom of being a Fragile X Carrier. Sadly, before being tested, Samantha’s maternal uncle passed away at age 60 from what was likely FXTAS, a condition associated with being a carrier of Fragile X Syndrome.

Samantha holds a Masters Degree in Social Work from San Diego State University, but left the workforce to tend to her son’s needs. She runs an Instagram account for her son and his diagnosis where she helps newly diagnosed families feel less alone and less overwhelmed with parenting a child with special needs. She is passionate about advocacy work for marginalized groups. In her spare time she enjoys running, swimming, and photography.

Tanner Coleman

Tanner Coleman, MS, CGC is a board-certified genetic counselor who works at the HudsonAlpha Institute for Biotechnology in Huntsville, AL. He provides direct patient care at the Smith Family Clinic for Genomic Medicine, a general genomics clinic with a goal of providing diagnoses to adult and pediatric patients living with undiagnosed, rare disease. He is involved in genomics education and has experience educating a variety of audiences including healthcare professionals, nursing students, genetic counseling students, K-12 students, and others. He is passionate about expanding awareness and access to genetic counseling and testing and supporting patients and their families through their diagnostic odyssey. Tanner received his Master’s degree from the University of North Carolina at Greensboro Genetic Counseling Training Program. He is a member of the National Society of Genetic Counselors and is certified by the American Board of Genetic Counseling.

Meghan Musante

Meghan Musante is an experienced communications professional who works for Madrigal Pharmaceuticals. She earned her Bachelor’s degree in Mass Communication from Westfield State University in Massachusetts and her Master of Business Management in Leadership and Organizational Effectiveness from Troy State University at Holloman Air Force Base in New Mexico. Meg lives in Massachusetts and enjoys going to the beach with her family, walking her dogs and coaching her daughters’ soccer teams. She is passionate about raising awareness for rare diseases and previously worked at Genzyme Corporation, Oncopeptides, Forma Therapeutics and PTC Therapeutics. As a carrier of X-linked myotubular myopathy (XLMTM or MTM), the topic of rare diseases is personal. Meg is looking forward to serving on the board to help advocate for other women – and families – impacted by X-linked conditions.

Meghan Kofod

Meghan Kofod is the Marketing Manager at Baebies, a company that develops innovative diagnostic and newborn screening platforms. She earned her B.S. in Biotechnology from Worcester Polytechnic Institute and M.S. in Genetic Counseling from the University of South Carolina. Her journey from the laboratory to genetic counseling revealed her passion for making complex scientific and medical information understandable and relatable to everyone. Although her over 20-year marketing career has weaved through a wide variety of industries, Meghan is happy to be again serving in the life sciences.