Advocacy & Leadership Programs
Our Advocacy
Patient advocacy is at the core of everything we do! Whether we are hosting community events or representing the community in board rooms, emergency rooms or on the senate floor, we represent the sickle cell community and the mission to improve quality of life.
The most effective advocacy happens when strong communication and leadership skills accompany opportunities to elevate our voices and make a difference! So, whether you consider yourself a community champion, advocate or ambassador, Sickle Cell Foundation of MN is actively developing robust programs that will provide community-based leadership training and opportunities to tell your story and find community-centered solutions to improve overall health outcomes for the sickle cell community.
As a patient advocacy organization, we deeply value and rely upon:
Strong leaders
Shared goals
Unified voices
The power of telling YOUR story (storytelling)
Contact us if you are interested in participating as a future leader or speaker.
Our Voices Matter: Advocacy in Action
Nothing changes until we make our voices and experiences heard!
At Sickle Cell Foundation of MN (SickleCellMN), we believe that the sickle cell community deserves to interact with medical professionals who treat us with dignity, respect and compassion throughout every interaction in the healthcare setting, including emergency departments.
We are well aware that this is not always the case and that we must, as individuals and as a community, demand accountability and improved care for each and every warrior! We also recognize that every interaction is not a negative interaction and that there are many incredible individuals working within the healthcare system who should be recognized for their expertise, empathy and compassion toward our unique individual and community needs.
For these reasons, we have developed a reporting system to track the feedback that we receive from our sickle cell community, but we need you to use your voice!
Our Voices Matter! is part of our Advocacy in Action Program and provides a way for individuals living with or caring for someone with sickle cell disease to share their personal experiences for the sake of improving overall care in our community.
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All feedback is important and by sharing your positive experiences we can:
• Provide this feedback to schools, teachers, hospitals and providers who are making improvements
• Provide recommendations and feedback to others who are looking for knowledgeable and compassionate care in Minnesota
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• Sharing you or your loved one’s negative experience(s) allows us to better advocate for the sickle cell community by providing accurate accounts of personal LIVED experiences of persons living right here in Minnesota!
• Sharing your negative experiences with us allows the community to have a safe space to report your experiences without worrying about how it may or may not negatively impact you or your child’s care.
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Community advocacy & storytelling
Internal tracking & reporting
Identifying sickle cell champions within healthcare settings
Institutional accountability (filing formal complaints)
Legislative efforts
MN Sickle Cell Providers Network
Led by our Chief Medical Advisor, Dr. Stephen Nelson, and well-respected Med Peds physician, Dr. Alex Boucher, this state-based collaborative is designed to:
Connect local sickle cell experts and other health care professionals who care for the sickle cell population to other sickle cell providers and experts across the state of Minnesota.
Provide a neutral space for medical providers and other experts across Minnesota to gather healthcare initiatives and other quality improvement (QI) efforts that improve SCD outcomes across the lifespan.
*Members of the MN-SCPN may be asked to participate in education sessions and/or speak at SickleCellMN conferences and symposiums to increase peer engagement and provide sickle cell expertise within and between specialty fields.
S.M.A.R.T. Champions Leadership Development
Sickle Cell Foundation of MN believes that connecting individuals and families with strong leaders and mentors is a step in the right direction. It is with this need in mind that we are launching our 2023 SMART Champions Pilot Program at no cost to community leaders (and their staff) who work with individuals with chronic health conditions!
The 4-part Pilot Program launched in March 2023 and began with our SMART Leadership Webinar & Training. The leadership training will be followed by our Sickle SMART Health Literacy Bootcamp. This training is designed for leaders, ambassadors, advocates & CHW’s in the sickle cell community. Bootcamp sessions will focus on SCD, healthcare systems, health outcomes, health disparities, research and data collection and use. (registration info coming soon)
For questions about this pilot program, please contact us at smartchampions@sicklecellmn.org
About our SMART Leadership facilitator:
Former Minnesota Gopher football standout, Dr. Tommy A. Watson, Ed. D, ACC, is considered a leading authority on resilience, change, motivation, and leadership! Dr. Watson inspires and motivates individuals and organizations to be their best by turning all transitions into triumphs! He urges leaders toward new ways of thinking and helps them to access their untapped potential. Dr. Watson delivers practical and engaging speeches that have an audience laughing one minute and learning timeless truths of success the next.
SickleCellMN Legislative Advocacy
Sickle Cell Foundation of MN proudly partners with Sick Cells, SCDAA, and Sickle Cell Community Consortium to bring legislative education and advocacy toolkits to the sickle cell community.
Visit our Advocacy Resources page under ‘ Get Involved’ to find resources and learn more about how you can use YOUR VOICE to advocate for the needs of individuals and caregivers affected by sickle cell disease across the Minnesota.
Check out this 2022 conversation with Minnesota Senator Amy Klobuchar, Dr. Hannah Lichtsinn and Rae Blaylark
*Remember to visit our Advocacy Resource Page to learn more.
Join our Legislative Advocacy Workgroup
The sickle cell community has historically been underrepresented
in policy and legislation and although the legislative process can be intimidating, changing policies is what changes the healthcare system and changing the healthcare system dramatically changes outcomes.
SickleCellMN is committed to advocating on behalf of individuals living with or impacted by sickle cell disease and sickle cell trait! We can’t do this without YOUR VOICE! Policy advocacy and incorporating the SCD voice into legislation requires all of us!
Join our legislative strategy team in our efforts to make changes in the laws and legislative processes affecting the sickle cell community and use your voice for good!
*Knowledge of the legislative process is helpful, but not required