Role of Advocacy Groups and How to Get Involved

Community outreach in action—SCPASCC sets up an awareness and blood donation table to educate, support, and engage the public in the fight against sickle cell disease.

Grassroots advocacy has always been the backbone of change. When communities come together to speak with one voice, that voice carries far beyond one room or one town. For those living with sickle cell disease, advocacy groups are more than helpful, they are essential. Families and patients know the challenges all too well, but advocacy turns those personal struggles into public action. The South Central Pennsylvania Sickle Cell Council (SCPASCC) does the same for the sickle cell community, advocacy begins with care and grows into lasting change.

The role of advocacy groups is not only about raising funds or speaking at events. It is about walking beside families in hospital halls, speaking truth to lawmakers, and building safe places where patients are seen and supported. These groups remind us that when people choose to act together, no effort is too small to matter.

What Advocacy Means at the Grassroots Level

Advocacy does not have to mean leading a rally or speaking in front of hundreds of people. At the grassroots level, it often looks like caring for one family, sharing correct information, or making sure schools understand the needs of children with sickle cell disease. Every call, every conversation, every letter makes a difference. It is about taking what you see and refusing to stay silent.

Families who step up for each other show what grassroots advocacy looks like. Neighbors who ask how they can help, or who deliver meals during a hospital stay, become advocates without even knowing it. These simple, small acts prove that advocacy is not about size but about heart.

Examples of Small Scale Actions That Make a Difference

One mother may speak with her child’s school nurse about better support during a pain crisis. That single conversation changes how teachers respond to the next student. A high school student might share facts about sickle cell disease with her classmates, clearing away myths. A local church could host an awareness day that leads to new volunteers giving blood. All of these examples may feel small at first, but they add up to meaningful impact.

Sickle cell families know the weight of the disease, but they also know the strength that grows when people choose action. Small, consistent efforts often reach further than one big event. Each act is like planting a seed. With time, those seeds grow into strong voices that shape communities and systems.

SCPASCC Events as Opportunities

One of the most powerful ways to act is by joining events held by advocacy groups. SCPASCC creates events that allow people to show support, raise awareness, and strengthen community ties. For example, the Sickle Cell Awareness Walk & Celebration Cookout in Harrisburg was on September 6, 2025, it brought families, supporters, and advocates together in both remembrance and celebration. Walking side by side sends a message that no one faces sickle cell disease alone.

SCPASCC Celebrates September National Sickle Cell Awareness Month

Later in September, the Light Lt Governor Balcony Red on the 16th will shine bright over Harrisburg as a public sign of awareness. The Community Blood Drive on September 26 offers direct action to save lives. Closing out the month, the Sickle Cell Awareness Press Conference on September 30 will bring leaders and advocates together to call for lasting change. Each event serves as a chance for anyone, a patient, parent, friend, or supporter, to be part of the movement.

How Small Actions Build Strong Voices

A single walk may seem simple, but when hundreds gather together, their steps echo. A blood drive may bring in just one donation per person, but each pint collected could save a life. When a group speaks at a press conference, lawmakers begin to listen more closely. These are the ways small actions grow into strong voices.

Grassroots power lies in persistence. It is not about making headlines once but about showing up again and again. From small town events to state capital gatherings, repeated effort brings sickle cell disease into public awareness, into hospitals, and into legislative chambers. Change is made by those who keep showing up.

Ways You Can Get Involved Right Now

Getting involved does not always mean taking on big roles. You can start with simple steps today. Attend events like those organized by SCPASCC. Show up with your family, bring a friend, or volunteer for a task. Share the information on your social media pages so that others learn. Donate blood at community drives. Reach out to families who are going through a hard season and offer help.

You can also use your skills and resources to support. Some may mentor a child living with sickle cell disease. Others may support by donating to advocacy organizations. Teachers can work to learn how sickle cell affects students in their classrooms. Pastors and community leaders can invite speakers from advocacy groups. Each step builds the whole.

Every effort matters. From supporting one child in school, to attending a walk in Harrisburg, to standing at the state capital, all these efforts create lasting change. Advocacy groups like SCPASCC give us a clear example of how community power grows. Families and patients should never feel alone in the fight against sickle cell disease. When we come together, voices rise. When we act with care and persistence, the world notices.

You do not need to be the loudest to lead. You only need to act where you are with what you have. The sickle cell community is stronger when everyone finds a way to take part. Whether you attend one event, give blood, or share information, you are part of a growing force that speaks loudly for those living with sickle cell disease.

Sources:

South Central Pennsylvania Sickle Cell Council: https://www.scpascc.org/events

CDC on Sickle Cell Disease: https://www.cdc.gov/ncbddd/sicklecell/index.html

American Society of Hematology on Sickle Cell Disease: https://www.hematology.org/education/patients/anemia/sickle-cell-disease 

National Heart, Lung, and Blood Institute on Sickle Cell Disease: https://www.nhlbi.nih.gov/health-topics/sickle-cell-disease 

Sickle Cell Disease Association of America Inc: https://www.sicklecelldisease.org/