Meet the Team
Better Future 4 U board members are committed to making positive changes for children and families affected by HNRNPU. Those who serve on our board of directors do so on a voluntary basis, without compensation. Our board of directors and experts work collaboratively with an inclusive range of locations and impact in mind. Meet the members behind our mission by scrolling below.
President, Board Member
Sonja Ross
Sonja Ross is a dedicated co-founding member of the Board of Directors for the Better Future 4 U non-profit. Her son Tate was diagnosed with the rare genetic mutation known as HNRNPU at one and a half years old. Sonja graduated from the University of Nebraska at Kearney with a bachelor’s degree of Science in Industrial Distribution. After college, she worked in sales for General Electric and Cargill before becoming a stay-at-home mom to her three kids. When Sonja is not caring for her children and attending their activities, she helps her husband, Lance, on their family farm in southeast Nebraska. Sonja’s goal is to spread awareness and raise funds to help support the research that is working towards a treatment for kids diagnosed with HNRNPU.
Vice President, Board Member
Radha Shenoy
Radha is a resolute and passionate co-founding member of the Board of Directors for the Better Future 4 U non-profit. After 10 years of research and many doctor appointments, her daughter Ankita was diagnosed with the HNRNPU-related neurodevelopmental mutation in 2018. Radha moved from India to the United States in 2001 and graduated with a master's in Computer Science from California State University, East Bay. She has worked at various technology companies like AOL, GitHub, and TuneIn. One of Radha’s primary objectives in life is to increase awareness around HNRNPU, raise funds to support research and help geneticists find a cure, so individuals affected by this mutation can lead an independent and full life.
Treasurer, Board Member
Rusty Shadden
Rusty is a co-founding member of the Better Future 4 U board and the treasurer of this non-profit organization. He resides in Lufkin, Texas with his wife and three children. His middle son, Gunnar, was diagnosed with HNRNPU at the age of 7 after years of being misdiagnosed. Rusty has run several dining establishments over the years, he is a teacher and a mentor for managers and staff. He currently serves on his daughter's school board, the vestry board for his church, and now is assisting on the Better Future 4 U board. He also has headed up multiple golf tournaments and other various fundraisers to raise money for Epilepsy, in honor of Gunnar and others who suffer in our community. He assists in raising money for his daughter's school through different types of fundraising events. Rusty is vested in the future of all his children and his community. Gunnar suffers from refractory epilepsy; unfortunately, his team of doctors is still looking for a better treatment plan. This has made Rusty want to assist in raising awareness and funds to help facilitate a treatment for HNRNPU, and to help other children in the future to not have to go down the same road as Gunnar.
Secretary, Board Member
Michelle O'Doherty
Michelle O’ Doherty, who hails from the South of Ireland, is mother to Summer who was diagnosed with HNRNPU at 18 months. Michelle is passionate about promoting various supports for research into the HNRNPU gene which may lead to better outcomes & understanding of those affected by HNRNPU. Michelle works part-time as an office manager in a medical practice and is a qualified hairdresser in a former life. She has a Bachelor of Arts Degree, from University College Cork, majoring in French & History.
Development Director, Board Member
Dustin Delaney
Dustin is a current and co-founding board member of Better 4 U. He and his wife and 3 sons reside in a small town in southeast South Dakota. His third son, John, was diagnosed with de-novo variant at 2 years of age. Dustin earned his undergraduate Bachelor's degree in nursing from South Dakota State University in 2008, Masters's degree from Mount Marty University in 2011 and postgraduate certificate in Non-Surgical Pain Management from the University of South Florida in 2019. He is board certified in both Nurse Anesthesiology and Non-Surgical Pain Management and currently owns and runs an anaesthesia consultant company as well as a Non-Surgical Pain Management clinic. Dustin has previous experience in other non-profit orgainzations. He was a previous co-founding board member of Ducks Unlimited Dakota Dunes Chapter. He was also a previous board of directors for 4 years for the McCook Lake Chapter of the Izaak Walton League of America and voted as president for two consecutive terms. In his free time, Dustin enjoys fishing and spending time on the lake with his family. He is inspired to raise awareness, connect families, and help in any way to advance research and treatment for individuals affected by HNRNPU.
Advocacy Director, Board Member
Amanda Reuther
Amanda is a committed co-founding member of the Board of Directors for the Better Future 4 U nonprofit. After a four year diagnostic odyssea, her daughter Paeyton was diagnosed with HNRNPU in 2016. For the last 18 years, Amanda has owned and operated her own business in San Diego, CA. She has a passion for advocacy and completed the Special Education Law and Advocacy Series and gained certification through the University of San Diego School of Law. She is a board President for the Special Education Parent Council for Encinitas Union School District. Utilizing social media for greater global outreach, Amanda has founded the HNRNP-Related Neuro Developmental Disorders Caregiver Connect support group. In her spare time, she enjoys spending time with her children and husband and taking trips to Disneyland. Amanda’s goal is to raise awareness of HNRNPU by advocating and networking as well as to raise funds for research that ultimately leads to a cure.
Board Member
Foziya Carne
Foziya, a resident of Alberta, Canada, is a co-founding member of the non-profit organization Better Future 4 U and serves on its Board of Directors. She lives with her husband and two children, including her oldest daughter, Makena, who was diagnosed with HNRNPU in 2020 at 2 and a half years old. Foziya graduated with a Bachelor's in Kinesiology from the University of Calgary in 2007 and received her Medical Radiologic Technology diploma in 2010 from SAIT. She has since specialized in Mammography and Bone Densitometry, and currently manages a large Diagnostic Imaging Clinic in her city. Dedicated to family and fond of traveling, Foziya's primary mission with Better Future 4 U is to support and advance research in the area of the HNRNPU gene. Her blend of professional expertise and personal experience offers a unique perspective as she strives to create a better future for those affected by HNRNPU.
Meet the Experts
Through Better Future 4 U, we bring together scientific experts from around the world to collaborate on research, innovation and advocacy. Our team is made up of top professionals who are passionate about improving health and wellness for all individuals living with HNRNPU, with a commitment to excellence in every aspect of their work.
Advisor
Dr. Meena Balasubramanian MBBS, DCH, FRCPCH, MD
Research Director, University of Sheffield. Consultant Clinical Geneticist; Sheffield Children’s NHS Foundation Trust Dr Balasubramanian is an academic clinical geneticist based in Sheffield. In genomic medicine, Dr Balasubramanian has several studies focused on genotype-phenotype correlation in newly identified genes. She is currently pursuing an MRC Fellowship, having established her own lab on zebrafish disease models for bone fragility. She has published over 120 principal-author publications and textbooks including a recent molecular medicine series on OI. She has also edited and written several patient information leaflets on rare genetic disorders for Unique (www.rarechromo.org) and Brittle Bone Society. Meena is a leading researcher into several rare neurodevelopmental disorders (RNDD) genes and runs natural history studies, including, HNRNPU and ASXL3. Meena’s group have published the largest clinical cohorts for the following RNDD genes: HNRNPU, ASXL3, SIN3A, IQSEC2,YWHAG, ZMYND11 and written the expert literature reviews (Genereview/ Orphanet) for ASXL3, HNRNPU & SIN3A. Her other roles include Research Director, North East and Yorkshire NHS Genomic Medicine Service Alliance; Bone fragility lead, Genomic Clinical Interpretation Partnership (GeCIP), part of 100,000 Genomes project initiative to establish genetic causes of rare diseases in UK. She is Secretary for Clinical Genetics Society and serves on the ‘Medical Advisory Board’ for Brittle Bone Society, HNRNP Family Foundation, SATB2 patient support group and Chair of the ‘Sheffield Advanced Therapeutics- Development and Delivery Collaborative’ (SAT-DDC) at Sheffield Children’s Hospital.
Advisor
Professor Stuart A. Wilson
Roper Chair in Genetics, School of Biosciences, University of Sheffield, U.K. Director, Sheffield Institute For Nucleic acids (SINfoNiA) Professor Wilson is the Roper Chair in Genetics at the University of Sheffield. He runs a research group analysing the roles of RNA binding proteins in human gene expression and disease. His research interests are focussed on two related and intertwined biological problems. Firstly, how is mRNA transported from the nucleus to the cytoplasm in human cells and secondly how are certain RNAs tethered to chromatin within the nucleus. In recent years the laboratory has focussed on the HNRNPU family of proteins including HNRNPU, HNRNPUL1 and HNRNPUL2. We are actively investigating the molecular functions of all three of these proteins using a wide range of molecular, biochemical and cell biology techniques. His research is currently funded by the Medical Research Council and Biotechnology and Biological Sciences Research Council (UK) and Astrazeneca. Professor Wilson is also the Director of Sheffield Institute for Nucleic Acids which is a multidisciplinary group of scientists working on all aspects on nucleic acids. https://sites.google.com/sheffield.ac.uk/sinfonia/home
Advisor
Dr. Christopher Ricupero
PhD
Dr. Christopher Ricupero, PhD is an Associate Research Scientist at Columbia University Irving Medical Center in New York City. Dr. Ricupero received his PhD in Neuroscience and the central theme to his research is neurodevelopment. He has a special interest in rare neurological and neurogenetic disorders within the HNRNP family. He is currently investigating the underlying mechanisms of HNRNP-related neurodevelopmental disorders by modeling the disorders in a dish using patient specific stem cells and derived neurons. He is also active in the development of therapeutics using gene targeting approaches. Dr. Ricupero is a Scientific Advisory Board member of the HNRNP Family Foundation and member of the Consortium on Neurodevelopmental Studies of Autism Spectrum and Related Disorders.
In Collaboration With
