Indiana Sickle Cell Consortium

Indiana Sickle Cell Consortium The ISCC is committed to improving the lives of individuals effected by Sickle Cell Disease and Sickle Cell Trait in Indiana.

If you are a Sickle Cell Warrior in the state of Indiana between the ages of 7-16? Are you ready for a new adventure? Yo...
04/30/2026

If you are a Sickle Cell Warrior in the state of Indiana between the ages of 7-16? Are you ready for a new adventure? You can even bring your brother or sister! Register now for Camp Silver Moon! Link in bio. 🏕️🌙

Leadership in the sickle cell community requires more than advocacy—it requires alignment. 🤝As we wrapped the 2026 India...
04/30/2026

Leadership in the sickle cell community requires more than advocacy—it requires alignment. 🤝

As we wrapped the 2026 Indiana Sickle Cell Advocacy Day, this photo represents something deeper than attendance. It represents integration.

A Clinical Implementation & Innovation Specialist + A Community Healthcare Navigator & Partnership Builder. Two lenses. One mission.

When clinical strategy and community relationships operate in silos, progress slows. But when they move together? Solutions accelerate.

We aren’t waiting for the healthcare system to “catch up”—we are modeling its future right now.

Change doesn’t wait for funding to stabilize; it begins when leaders decide to walk in alignment.

04/20/2026

I didn’t come to be polite. I came to tell the truth.

This February, I stood as the keynote speaker for Sickle Cell Advocacy Day and said what too many people are afraid to say out loud:

Sickle cell care in this country is in crisis.
When funding is cut, data disappears. When data disappears, accountability disappears. And when accountability disappears, patients suffer.

I spoke about:
Research being defunded and abandoned
Harmful policies pushing oral-only pain treatment
Doctors not being required to learn pain management
And the dangerous lie that our relief is “euphoria” instead of survival

Let me be clear- what you see in us is not addiction. It is relief.

Relief from pain that bends the body, drains the spirit, and tests the will to live.
Indiana alone has 1,700+ sickle cell-affected households. We are not rare. We are not invisible. We are not disposable.

If you have a heart for sickle cell, this is your moment: Get involved. Join a board. Advocate. Speak up. Show up.

Because America does not get to forget about us. We are here. We are watching. And we are demanding better.

Jade Parker-Dinkins

04/17/2026

Sickle cell disease is more than a diagnosis—it’s a policy issue. 🩺

For too long, we’ve asked patients, families, and community programs to fill the gaps left by systemic underinvestment. We ask them to produce "better outcomes" while stretching limited dollars in systems that weren't designed for them.

The reality? Underinvestment is expensive. It shows up as:
Higher emergency utilization 🚑
Preventable complications 📉
Caregiver burnout and workforce loss 💔

Equity isn’t charity; it’s infrastructure. We need sustained funding for research, transition models, and community programs that are already doing the heavy lifting.

When we fund what works, we don’t just reduce costs—we improve lives. This is the work I’m deeply committed to: building models that move beyond treatment and toward true equity.

04/13/2026

Sickle Cell Cannot Wait.

Here in our Indiana Sickle Cell Advocacy Day series, Mrs. Lena Harvey — Co-Chair of the Indiana Sickle Cell Consortium and a dedicated advocate for Indiana’s sickle cell community — reflects with Jade Parker-Dinkins on the responsibility we share moving forward.

For individuals and families living with sickle cell disease, urgency is part of everyday life.

It is managing care.
It is coordinating resources.
It is building support systems that sustain health and stability.

The work we advance in Indiana contributes to broader progress in sickle cell care across regions and throughout the country.

Healthcare innovation and thoughtful implementation matter because they help ensure:
• Research informs practice
• Resources reach communities
• Funding supports long-term sustainability
• Policies translate into meaningful outcomes

“Sickle Cell Cannot Wait” is a call for alignment — across healthcare providers, researchers, policymakers, and community leaders.

Progress happens when we move together.

💬 As we continue this work, what does unity in action look like to you?

04/09/2026

From Barriers to Blueprint: Building the Infrastructure Sickle Cell Care Requires
Advocacy must move beyond awareness — it must address infrastructure.
In Part 2 of our Indiana Sickle Cell Advocacy Day recap, Mrs. Lena Harvey — Co-Chair of the Indiana Sickle Cell Consortium and recognized advocate across Indiana — speaks to critical systemic barriers impacting the sickle cell community.
Two areas she emphasized:
📊 Access to structured, reliable data
💰 Sustainable funding to support patients, families, and community-led work
Without comprehensive research and organized data, it becomes difficult to:
• Identify gaps in care
• Track outcomes across communities
• Strengthen policy initiatives
• Secure long-term investment
And without consistent funding, families and community leaders often carry the burden of navigating care, resources, and advocacy with limited support.
Improving outcomes will require:
• Stronger research infrastructure
• Transparent and accessible data
• Strategic funding allocation
• Continued collaboration between state leaders, healthcare systems, and community advocates
Lasting change depends on systems that support the people doing the work — and the families living it every day.
💬 What investments do you believe are most needed to strengthen sickle cell support in Indiana?

Interview by: Parker-Dinkins

04/07/2026

From Story to Strategy: The Role of Patient Voice in Advocacy
Advocacy Day at the Indiana Statehouse was more than policy — it was personal.
Lena Harvey, Co-Chair of the Indiana Sickle Cell Consortium and host of this year’s Advocacy Day, reflected on what meant the most:
Hearing the voices of warriors.
Parents. Patients. Providers. Community members.
Every story different. Every testimony powerful. Together, a reminder that we are stronger when we stand united.
Sickle cell is often discussed in statistics — but behind every number is a lived experience.
Advocacy doesn’t start at the Capitol.
It starts at home.
• Speak up in your appointments
• Share your story
• Educate your community
• Encourage another warrior
Your voice matters.
💬 Drop one word that describes what advocacy means to you — or tag a warrior whose story inspires you.

Interview by: Jade Parker-Dinkins

Are you ready to make some new lifelong friends that understand you and your unique situation? Step outside your comfor...
04/06/2026

Are you ready to make some new lifelong friends that understand you and your unique situation? Step outside your comfort zone and try something totally new? Have the time of your life in the great outdoors? If you answered yes to any of these questions, live in Indiana, and have sickle cell disease then you need to register to attend Camp Silver Moon! Camp is from June 7th - June 12th, 2026. The link to register is in the bio. If you have questions please feel free to call us at 317-871-0000 and ask for one of the Sickle Cell Program Coordinators. 🏕️🌙😎

Snow is still on the ground across much of Indiana and it is hard to believe it could be time to register for camp, but ...
02/10/2026

Snow is still on the ground across much of Indiana and it is hard to believe it could be time to register for camp, but it IS!! Registration for Camp Silver Moon is open. If you are a child with sickle cell disease, live in Indiana, and are between the ages of 7-16 you are eligible to attend. If you have a brother or sister between the ages of 7-16 they can attend with you. The link to register is in the bio. Spots are limited so register today!! You don’t want to miss this amazing opportunity. 🏕️🌙

Grateful for every person who showed up, watched, shared, and stood with the sickle cell community this year.The work co...
02/03/2026

Grateful for every person who showed up, watched, shared, and stood with the sickle cell community this year.
The work continues- but the day mattered.

Sincerely, ISCC Advocacy Day Committee 2026

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165 EMS T2 Lane
North Webster, IN
46555

Telephone

3178710000

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