Staff Directory

Dr. Arik Johnson is the Chief Mission Officer at HDSA, where he oversees all mission programs and services dedicated to supporting individuals and families affected by Huntington’s disease. A licensed clinical psychologist, Dr. Johnson has a wealth of experience working with Huntington’s patients and their families through his previous role at the HDSA Center of Excellence at UCLA.

At UCLA, he also provided clinical services in the Movement Disorder Program, assisting those with Parkinson’s disease, atypical Parkinsonian disorders, and other movement conditions. During his tenure, Dr. Johnson was actively involved with HDSA in various volunteer capacities, including serving on the HDSA Board of Trustees from 2010 to 2020 and chairing the board during the 2017-2018 term.

Dr. Johnson holds a Doctor of Psychology (PsyD) and a Master’s degree from the California School of Professional Psychology at Alliant International University. He earned his Bachelor of Science from the University of Minnesota.

Jessica Marsolek, MSW, LGSW is passionate about providing care and support to those impacted by and living with HD.  In her role at HDSA, she oversees the organization’s national community services programs which includes: our network of over 100 social workers, support groups, disability services and youth and young adult programs. Before joining the HDSA National staff team, Jessica served as the HDSA Minnesota Chapter social worker for 17 years and began her expertise as a care provider specializing in HD through her work at Good Samaritan Specialty Center where she was the HD unit social worker.  

Jessica believes strongly in raising awareness and understanding of Huntington’s Disease, as a critical way to improve the quality of life for those living with HD. She does this at every opportunity that she finds and comes her way. Jessica has raised awareness about HD in many ways, including co-authoring articles and a textbook chapter about HD, and running 4 marathons to benefit the mission of HDSA. She finds her career to be a natural extension of who she is and works daily to honor those who she has cared for and who also invited her to walk alongside their HD journey. 

Jessica lives in Minnesota with her husband Matt, two children, two cats and some chickens. She loves comedy in all forms- life can be heavy enough, so she likes to keep it light & fun.   

Derrick Bell is the Senior Manager of Education Programs and a member of the HDSA Mission Team. He manages HDSA’s National Education Program and works directly with volunteers to help develop Education Days around the US. Originally from Louisiana, Derrick has been living in the New York City area for the last 16 years. He is a proud Fordham University graduate (Go Rams!!) and a former collegiate athlete. With a professional background in sales, finance, and educational administration developed over the last 12 years, Derrick brings a wealth of experience to his role. Known for his outgoing personality and love of good jokes, Derrick enjoys hanging out with friends, music, sports, and traveling in his free time.

Allison Bartlett, Esq. is the Senior Manager of Disability Programs at the Huntington’s Disease Society of America (HDSA). The program provides resources and education in a variety of disability topics, from Social Security and insurance benefits to legal and financial planning. Allison works directly with the community, including HD-impacted families, social workers, clinical care teams, medical professionals, and lawyers. She has created a large resource library with handouts, guides, and webinars to help walk the community through all steps of the disability process. Allison has been working with the HD community for almost 10.  

Before joining HDSA, Allison was a disability attorney at Caring Voice Coalition who specialized in guiding people with rare, chronic conditions, like Huntington’s disease, through the complex Social Security disability system. Allison has been passionate about nonprofit work and human rights since high school. She has more than 15 years of experience in the non-profit field, working on numerous issues including human rights, domestic violence, social justice, and environmental protection. Allison has traveled extensively, visiting 18 countries, working in England, and studying in Argentina and Switzerland. Allison holds a J.D. from the University of Cincinnati College of Law and a B.A. in International Affairs from James Madison University. She is admitted to the Virginia Bar. 

MaryAnn Emerick has been working within the HD&JHD community for over 8 years. She has lived in NY her whole life but loves the mountains and outdoors.  She started working at a long-term care facility on an HD specialized unit as the program manager, and then joined the HDSA Mission team almost 4 years ago as manager of youth and community services.  MaryAnn has been involved within the community for many years and a volunteer for HDSA for over 16 years.  Some of her favorite things to do is educate, support, and advocate however she can, taking any hobby and uses it as a platform to spread awareness for HD&JHD 😊 <3 

As the Senior Manager of Advocacy Phyllis directs the organization’s national advocacy strategy. She thrives off of witnessing the empowerment HDSA’s community of advocates experience when they are raising the profile of HD with federal regulators and congressional members to speed the innovation of new therapeutic interventions, increase access to care and reduce the financial burden of HD families. 

Phyllis is passionate about raising the voice of people with lived experience to bring about systemic change. She has tapped into that voice to co-author papers on the financial impact of care as well as preferred treatment outcomes of patients and their families and has served as a patient representative panelist at several FDA public meetings. 

Mynelly Perez is Director of Marketing & Communications at the Huntington’s Disease Society of America (HDSA). With over 22 years of experience in nonprofit Development and Communications, Mynelly is dedicated to giving a voice to HD families. She works closely with the community to advance HDSA’s mission and vision for a brighter future.

A lifelong New Yorker, Mynelly loves exploring the city she calls home with her husband and two young children, Julian & Sophia. In her spare time, she’s actively involved in her children’s school and local church, embodying her commitment to the community both professionally and personally.

Originally from Utah, Weston has lived in New York for two years. After receiving his B.S. in Communications from St. John’s University, he was eager to join the non-profit space. Weston lives in Brooklyn, NY and enjoys spending his free time exploring, visiting museums, and playing slow-pitch softball. 

Jamison brought nearly 20 years of non-profit and higher-education fundraising experience – and a passion for helping others – to HDSA in March 2018. Six months later, at the Long Island Team Hope Walk, he bumped into a second-grade classmate who shared that he had lost his father to Huntington’s disease and his younger brother was gene-positive and symptomatic.   

Jamison’s love of fundraising and philanthropy began when he received a donor academic scholarship to the University of Miami, and then a donor athletic scholarship to play golf at Hofstra University when he transferred there in January 1994.  Little did he know he would join Hofstra’s admissions office a few years later, and two years after that be recruited to the office of development to oversee the university’s donor scholarship & endowment program.  

As Chief Development Officer, Jamison leads the development team that oversees all revenue generation to amplify the society’s mission programs & services across the country, from Chapter & Affiliate events and national giving days to corporate & foundation development and direct mail campaigns to individual major gifts. 

Jamison is a donor and volunteer himself. He supports animal welfare, cancer/lymphoma, youth and music organizations, his church, and HDSA (as a monthly donor and event supporter). He was a scout leader and coached his son’s youth baseball, basketball, and soccer teams. He understands the life of a volunteer and the commitment it takes to raise a hand to volunteer.  

Though born in Springfield, MA, Jamison considers himself a New Yorker and Long Islander. He lives in Bay Shore, NY with his wife, Denise (whom he met on the bus in kindergarten), their son, Ethan (a sophomore at Louisiana State University, #GeauxTigers!), and their three rescue pups (Brady, Harley, and Harper). Jamison is an avid golfer, skier, and car enthusiast. 

Since joining the team in 2022 as the Assistant Director of Corporate and Foundation Development, Emilie has worked to amplify HDSA’s efforts in engaging its corporate, foundation, and patient advocacy partners and identify opportunities for collaboration and support to provide help for today and hope for tomorrow for people with lived HD experiences and their families. Over her ten years of fundraising across higher education, healthcare systems, and non-profits, Emilie has intentionally aligned herself with organizations that leverage their resources and partnerships to build healthy and equitable communities.  

In her spare time, Emilie enjoys applying her creativity and curiosity towards fashion, flower artistry, storytelling, and consulting for the Newark Public Library. She is a proud graduate of Union County College, the University of Pennsylvania, and Rutgers University-Newark. 

Inspired by their early experiences working with nonprofit organizations, Milo is passionate about doing work that uplifts and empowers others. They are excited to bring their variety of experiences to the table as HDSA’s Development Manager, where they use their skills to support HD families nationwide. While the scope of their work spans the whole country, Milo is a native New Yorker who is always ready to discuss where to find the best gluten free pizza! 

With three decades of non-profit and fundraising expertise, Deb Boyd is a dynamic and dedicated collaborator. She emphasizes transparency and trust in her efforts to support HDSA’s network of 47 Chapters & Affiliates. Her mission is to elevate the brand and secure transformative funding and awareness for HDSA, ultimately improving the lives of everyone affected by Huntington’s Disease and their families. 

Before joining HDSA in 2010, Deb played a pivotal role in designing and implementing numerous infant death programs, providing vital support to bereaved families on both national and international levels. Her extensive experience includes serving on various committees, holding the executive position of Treasurer for the International Stillbirth Alliance, and chairing SIDS Family International. 

Deb earned her BA from Western Michigan University. She currently resides in Richland, Michigan, where she enjoys playing pickleball, traveling, and cheering on her grandsons at their baseball games. 

Virginia Goolkasian joined HDSA in 2004 as a Regional Director. She helps recruit, guide, train, and support volunteers in the Northeast region as they organize events to help fund the HDSA mission. 

She has a BA in psychology and a Masters in Healthcare Communications.  She became aware of how challenging HD was when working at a long-term care facility specializing in HD. That experience increased her passion to help put an end to HD.    

She lives in Massachusetts and enjoys singing with family and friends.  

As a Regional Development Officer at HDSA, Melinda is dedicated to expanding fundraising and volunteer efforts in the Northeast Region. She passionately supports volunteer leaders in the Huntington’s disease community, helping them discover purpose and drive in their roles. With over a decade of experience in volunteer-led organizations and philanthropic partnerships, Melinda excels in event planning, recruitment, and development coaching. Her M.P.A. from Rutgers University, specializing in Nonprofit Management, informs her commitment to supporting HD caregivers and addressing the unique challenges of the broader HD community. In her downtime, you’ll find Melinda hitting the greens to perfect her golf swing or adventuring with her family in the Catskill Mountains of New York. 

Thomas graduated from the University of Alabama with a BA in Political Science. After graduation, Thomas began a career in non-profit fundraising and joined the Greater Alabama Council of the Boy Scouts of America where he served as the District Executive for the Cheaha District from 2010-2014. In 2014, Thomas joined the Special Olympics Georgia team as the Director of Corporate Relations. He remained in that position until 2018 when he was promoted to Chief Development Officer.  Thomas started working with HDSA as the Regional Development Officer- South in the beginning of 2023. He is passionate about serving HD families and spreading awareness of HD in the South Region. 

In his spare time Thomas enjoys spending time with his wife, Kristen, and three kids, Parker, Candler, and TG. He enjoys hiking, fishing and attending games to cheer on the Crimson Tide and Atlanta Braves. 

Annelizabeth holds a Bachelor’s Degree from the University of Central Florida in Anthropology and two Masters Degrees, one in Hospitality and Tourism Management and a second in Nonprofit Management. She has a passion for nonprofit organizations and has spent over a decade fundraising and building community partnerships through strategic management. She has fundraised over $3.5 million since 2018 for the American Cancer Society and ALS Association. She is passionate about bringing her experience to HDSA and raising awareness for the HD community.  

She loves spending time at the beach, traveling, and reading psychological thrillers. She lives in Orlando, FL with her partner Jerry, and their two daughters, Eve and Layla. 

Camille is the Regional Development Officer for the HDSA Midwest Region and has been with HDSA for nearly 7 years. She has a passion for fundraising and engaging with those who are committed to making a difference.  Camille has developed many relationships with those affected by Huntington’s disease, as well as found that HD affects a few families within her inner-circle who shared their personal stories after she joined HDSA. She is driven to supporting HDSA’s mission by raising funds and encouraging others to join the fight against HD. 

Camille resides in Southeast Wisconsin with her husband, Joe, and two young children, Joseph and Kaylin. On her personal time, Camille and her husband attempt to find opportunities to visit new places and try new restaurants, but are otherwise fully immersed in parenthood and loving every minute.  

Peggy Cribbin serves as a Regional Development Officer.  She has over two decades of fundraising and nonprofit experience. Peggy leads HDSA’s Midwest Region, which is composed of 15 Chapters and an Affiliate.  She works with volunteers and leaders to oversee volunteer recruitment, board development, and fundraising. Peggy is passionate about making an HD difference to families she comes into contact with in her daily work.  She resides with her family in St. Louis, Missouri and enjoys golf and parish activities. 

Christine is a Regional Development Officer in the Pacific West, which spans across 13 states out west. She started with HDSA back in 2022 and loves getting to work alongside our Chapter, Affiliate, and Regional volunteers to raise awareness and funds for HD. She is deeply committed to fostering relationships and community engagement, and is always seeking opportunities to educate new stakeholders about our mission. 

Christine has a B.S. in Organizational Communication Studies from James Madison University (go dukes!) and an MBA in CSR & NGO Management from Hochschule Bonn-Rhein-Sieg while living in Germany. She brings over 7 years of experience in nonprofit fundraising, having dedicated her efforts to various causes including childhood hunger, homelessness, and addressing food insecurity in rural communities. 

Christine is from the east coast but currently lives in Denver, CO and loves high altitude hiking and watching + playing tennis any chance she gets. 

Tara has had a soft spot for nonprofits and helping others since she was in high school and her cheer team teamed up with the best buddies program. Having personal connections to a few different nonprofits and falling in love with her sorority’s philanthropy in college, Tara felt called to pursue involvement in nonprofits in a different way and made it her career goal to work in the nonprofit workforce. She is thrilled to bring her event/development skills and creativity to the organization in the hopes to make a lasting impact on the HD community.  

Tara supports the Northeast and South Regional Development Officers with regional event tasks and also assists them with data entry, reporting and auction item procurement. She also collaborates with the Special Event Assistant, West on backend event processes for all regions. Prior to working with HDSA Tara worked at other nonprofits and as an event coordinator at a country club. She brings 8+ years of event and administrative skills to her role and looks forward to learning more through HDSA. 

Melissa has been involved with nonprofits for over 10 years. She helped bring the Clothesline Project to her college and continues to volunteer at it every year. Melissa has a passion and a soft spot for helping those in pain as she understands living with chronic pain. Through this understanding she was drawn to helping on a larger scale. She is delighted to have the opportunity to use her creativity and her Organizational Science degree while also making an impact for the HD community.  

As the Special Events Assistant – West, Melissa supports the Midwest and Pacwest Regional Development officers with event promotion materials, data entry, creating emails and anything else that can help the RDO’s with their events. She gets to collaborate with the Special Event Assistant- East on the backend event process and creating the designs.  

Melissa resides with her family in Idaho Falls, Idaho and loves to take her son hiking and swimming. She also loves to sing and has even written a few songs!  

Rosemary is a seasoned leader who loves working with organizations to optimize finance and operations in their support of the mission while maintaining the highest levels of accountability and stewardship. As the COO for HDSA for nearly six years, Rosemary oversees Finance, HR, Legal, IT, Facilities, Administration and Chapter & Affiliate Operations.

For the prior seven years, Rosemary led an in-house financial consulting team at Planned Parenthood Federation of America protecting the brand and footprint by strengthening affiliate operations and financial sustainability in the face of a changing healthcare environment and constant external attacks on women’s health and rights.

Prior to joining Planned Parenthood, Rosemary was the Chief Financial Officer for 3 other not-for-profit organizations; International Women’s Health Coalition, Latino Commission on AIDS, and the Empire State Pride Agenda where she was proud to have had a role in securing the Sexual Orientation Non-Discrimination Act (SONDA) and the NYC Hate Crimes Act, codifying protections for LGBT New Yorkers. She also worked for 11 years in the private sector for a healthcare management company providing back office services for healthcare providers.

Rosemary is a native New Yorker with a BS in Accounting & AA in Liberal Arts from New York University and an MS in Taxation from Baruch College, Zicklin School of Business. She lives in Manhattan and the Fire Island Pines where she serves on the Board of Fire Commissioners.

On a personal note, Rosemary loves music & the Arts, is a soccer hooligan, and lives life in accordance with Jedi values.

Rebecca Chan serves as Director of Finance and her job will lead all day-to-day finance and accounting and managing the month-end closing process. Rebecca completed her undergraduate studies at SUNY at Geneseo. She has strong ties to family; family truly is everything. Thus, having a fiery passion in helping everyone in need. Rebecca enjoys cooking, riding bike, and travel with family and friends.  

As the Senior Manager, Volunteer Engagement Rema works closely with HDSA’s Chapter & Affiliate Advisory Committee developing strategic initiatives, resources and streamlining processes for our volunteer leaders to enhance their community impact and outreach. Rema has worked in volunteer management and engagement in the nonprofit and for-profit sectors for over 15 years.  Prior to joining the HDSA team in April 2022, Rema was the Director of Volunteer Services at Hospice of New York, honing her skills in building robust volunteer programs and fostering meaningful relationships.  

Rema’s dynamic leadership and deep commitment to volunteerism to drive transformative results and strengthen community connections, stems from a young age where she was first introduced to volunteering; her parents taught her the importance of doing something meaningful and helping those in need.  Volunteering and raising money for causes close to her heart continued throughout college, which naturally led to her finding a fulfilling career working directly with volunteers.  

Beyond her professional life, Rema finds joy in meeting new people, spending time in nature and with animals. On weekends, you can find Rema at a Farmer’s Market scouting seasonal flowers, vegetables and fruits and most importantly spending time with her family.  

Tenzing takes pride in helping others. In his role of two years at the Huntington’s Disease Society of America, his passion for making a difference shines through as he manages donations and builds relationships with donors.  No matter the method of communication, his caring nature always comes across.   

But Tenzing’s impact goes beyond his duties in the Finance Department.  He is known as the office’s mood-lifter or tries to be, always ready with a kind word or helping hand.  You will often find him pitching in across different teams or lending support at big events. 

Tenzing lives by the belief that every small act of kindness can spark hope.   His dedication to this idea inspires those around him and makes a real difference in people’s lives. 

My passion for non-profits was inspired by my grandparents who raised me. At a relatively young age, my grandfather, an avid reader lost his eyesight. While I’m grateful for my experience in the Banking and Finance industry I found the greatest fulfilment in charitable work. Originally from Melbourne, Australia, I have called New York City home for just over 10 years. My role at HDSA is to ensure staff have the necessary tools to perform their tasks, not least of which is maintaining a steady supply of caffeine. In my spare time I enjoy travel, cooking, entertaining, theatre and all the amazing things this beautiful city has to offer.