About Sickle Cell Foundation of MN

Sickle Cell Foundation of Minnesota (SCFMN or SickleCellMN) is a not-for-profit 501(c)3 community-based organization founded in 2015 in response to a long-standing need for a community-based organization with programs and services that serve the needs of the sickle cell community and provide a supportive system of advocacy, education, and health care accountability. Our executive board, advisory committees, workgroups and volunteers, are comprised of a diverse group of patients, caregivers, health care professionals, and other passionate experts and stakeholders in our community.

Executive Director

Rae Blaylark

Ms. Blaylark is the President and Chief Executive Officer of Sickle Cell Foundation of Minnesota SickleCellMN) and the proud parent of a young adult son living with sickle cell disease. In 2015, she founded Sickle Cell Foundation of MN as a means to provide community education & awareness, elevate patient voices and establish community-involved pathways to improve clinical outcomes across the lifespan.

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Over the past 18+ years, Ms. Blaylark has served on many local, state and national health advisory committees and has represented the sickle cell community in various professional roles, including blood and marrow donor recruitment, pediatric care coordination, hemoglobinopathy counselor, program coordinator, community liaison and community health worker (CHW). Most recently, Ms. Blaylark transitioned out of the clinic setting where for several years she served as the Sickle Cell Patient & Family Health Advocate and Sickle Cell Coordinator at Children’s Minnesota, where she provided support to 300+ patients and their families.

Ms. Blaylark brings a unique perspective and experiences into her role as a community leader who has navigated the sickle cell space both outside of the healthcare system as a caregiver and on the inside of the system as part of the pediatric clinical care team. It is through this dual lens that Ms. Blaylark continues to impact the trajectory of many individuals, families, and professionals, all of whom have a critical role in improving the outcomes of this precious population.

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Board of Directors

Sickle Cell Foundation of Minnesota Board of Directors, also referred to as the Executive Board, consists of a group of passionate, skilled, and informed individuals who jointly supervise the activities and financial concerns of the organization. Board powers, duties, and responsibilities are determined by government regulations and the organization's own constitution and bylaws.

The executive board is comprised of individuals representing multiple sectors in the stakeholder community. The Founder and President, Rae Blaylark, serves as the Executive Board Chair. All other executive roles are voted on and evaluated by current executive board members and bylaws.

*Members of the board of directors receive no monetary compensation for their participation as executive board members.

Chair, Board of Directors
*See bio above
Stephen Nelson, MD attended medical school and completed his pediatric residency at Eastern Virginia Medical School in Norfolk, Virginia. His pediatric hematology/oncology fellowship was completed at Duke University Medical Center in Durham, North Carolina. Dr. Nelson joined the hematology/oncology program at Children's -Minnesota in 1993. He was the director of the Sickle Cell Clinic until his retirement in January 2021.
As a white physician in the United States, he was unaware of issues of race, racism and whiteness and how these play out in the health of people of color. This is the experience of most physicians and health care providers. The effects of racism on the sickle cell community are of particular importance. And, Minnesota has some of the worst racial health disparities in the United States.
Motivated by this, Dr. Nelson has been studying, researching and training on health equity content extensively for the last 12 years and has been conducting racial justice trainings for physicians, nurses, students and others in the Upper Midwest and beyond. He is currently the Equity Consultant for the federally-funded regional sickle cell consortium STORM (Sickle cell Treatment, Outcomes, and Research in the Midwest).
Dr. Nelson is excited and humbled to be part of the sickle cell community.
Rev. Regina is a member of our Executive Leadership Team and serves as our Sickle Cell Community Chaplain.
After losing her first-born child to leukemia in 1969, Rev. Regina developed a deep and long-standing passion for serving the community through her lived experiences as a mother and caregiver with faith-based values. She has served in many capacities over the last 50+ years, including as a Co-Pastor, Chaplain, family counselor, and overall community advocate.
As Sickle Cell Community Chaplain, Rev. Regina also dedicates a portion of her time to others who are living with, caring for, or facing the loss of a loved one due to sickle cell disease. Rev. Regina has sickle cell trait and is the grandmother of a person living with sickle cell disease.
Kristin is a member of our executive leadership team and brings 20+ years of experience in caring for patients and families with sickle cell disease. Her passion and commitment to improving outcomes in this disease population makes her an incredible addition to our executive leadership team.
TaLana is a member of our executive leadership team and is the Mother of a young adult living with sickle cell disease. TaLana started her journey with the Sickle Cell Disease Association of Illinois (SCDAI) as an intern, while completing her last year of college at Northern Illinois University in DeKalb, IL where she graduated and obtained a bachelor's degree in Public Health. Upon graduating in June 2003, TaLana began her career with SCDAI as the Case Manager and Sickle Cell Educator for the Newborn Screening Program, which focuses on the education and counseling of parents of infants born in IL who test positive for Sickle Cell Disease or Sickle Cell Trait.
TaLana received her hemoglobinopathy educator certification in 2003 and again in 2007.
TaLana has worked effortlessly at SCDAI for the past 17 years managing the HRSA federally funded Newborn Screening Program and as an advocate for improved health care and patient services for sickle cell disease patients, ensuring that they receive the comprehensive care that they deserve, as well as the supportive services to maintain a quality of life in the state of Illinois.
In April, 2009, TaLana achieved a Masters of Public Health degree from Walden University in Minneapolis, MN and currently serves as the Executive Director of the Sickle Cell Disease Association of Illinois (SCDAI), providing overall leadership and organizational direction for SCDAI.
Mrs. Hughes is an active participant on the Midwest Genetics Network, many advisory boards, a member of the current Sickle Cell Disease Treatment Demonstration Program Oversight Steering Committee and has national and regional leadership roles in political advocacy and community engagement.
TaLana is a wife and mother to an eighteen-year-old daughter with Sickle Cell Disease, SS who is a past youth ambassador for the Sickle Cell Disease Association of America (SCDAA); a twenty-three-year-old daughter with Sickle Cell Trait; and a fifteen year old son with Sickle Cell Trait.
Raymond is a member of our executive leadership team and serves SickleCellMN in various technical capacities. Raymond has sickle cell trait and has a family member living with sickle cell disease.
As an Associate Director and Senior Project Program Manager with 21 years of experience working alongside the executive team of a Fortune 100 Company, Raymond brings his business expertise along with his commitment to serving his community.

Advisory Boards and Workgroups

Sickle Cell Foundation of Minnesota consists of several advisory committees and workgroups. Committees and workgroups meet regularly and serve to inform and direct the work of the Foundation. Advisory board members and workgroups are selected based on the needs of the organization.

The Executive Advisory Committee consists of known leaders from a variety of sectors who share their experience and expertise related to business matters concerning the organization and assist with ensuring that we are in alignment with current business trends in non-profit space.
Members of the executive advisory committee meet regularly and receive no monetary compensation for their participation as advisory members.
We are currently accepting letters of interest for our Executive Advisory Committee. If you are a member of the business community, particularly in finance, law or education, we invite you to contact us below.
The Medical Advisory Committee (MAC) is composed of physicians, APP’s, RN’s Researchers, and other healthcare professionals who share their experience and expertise on behalf of patients and families affected by sickle cell disease.
The MAC serves to provide concrete, fact based medical opinions related to improving outcomes in healthcare settings for individuals living with sickle cell disease. Members of this board are not an extension of a client’s medical team and DO NOT provide direct medical advice to individual patients or clients of SCFMN.
The MAC is also tasked with overseeing the MN SCD Healthcare Collaborative/ Workgroup. This workgroup’s mission is to identify healthcare quality improvement strategies that positively impact and improve medical outcomes.
Members of the medical advisory committee and workgroup meet regularly and receive no monetary compensation for their participation as advisory members.
We are currently accepting letters of interest for our Medical Advisory Committee. If you are a member of the medical community and you are interested in joining our MAC team, please contact us below.
We believe that the patient and caregiver voices are at the core of our mission. Their lived experiences, learned wisdom and recommendations help us to form programs, services, and activities that align with our mission to improve overall quality of life. Committee members consist of patients, caregivers, and other community members who are personally impacted by sickle cell disease and are comfortable with sharing their ideas and have displayed the ability to speak thoughtfully and deliberately in a manner that represents the interests of all individuals affected by sickle cell disease.
The community advisory board should not be seen as a place where an individual committee member brings their personal grievances about clinic/hospital experiences to be dealt with and solved. Personal experiences should be used as examples when discussing programs, services, or broader advocacy needs across the community. Patient advisory members should also bring experiences and perceptions of other individuals and families to the discussion. The committee should not be seen as a support group.
Members of the community advisory committee typically meet monthly or as Foundation needs dictate and receive small stipends for their participation.
We are currently accepting letters of interest, recommendations, and referrals to join our Community Engagement Workgroup. For more information, please contact us.
The purpose of this committee is to provide expertise pertaining to financial matters of the organization. The Fundraising Workgroup will assist with the planning and coordination of fundraising events throughout the year. Members of this committee and workgroup have demonstrated passion and skills related to business finance, event planning, fundraising, and managing volunteer-led events.
Members of the Finance Committee and workgroup meet regularly throughout the year as Foundation needs may dictate and receive no monetary compensation for their participation.
We are currently accepting recommendations and letters of interest from those interested in joining the Fundraising Workgroup. Please contact us to learn more.
The purpose of this workgroup is to bring together legislative experts who provide a demonstrated knowledge and skills pertaining to legislative strategy. This team of advisors will assist the Foundation in developing legislative agendas and strategies that focus on equitable health practices and funding that address the issues and gaps that impact disease outcomes and quality of life for communities impacted by sickle cell disease.
Members of the Legislative Advisory Committee meet throughout the year as legislative needs may dictate and receive no monetary compensation for their participation.
We are currently accepting recommendations and letters of interest from those interested in joining this committee. Please contact us to learn more.