Working Together to Advance the Cause of Sickle Cell Disease

Calling all Community-based Sickle Cell Disease service organizations! The need has long existed for organizations to become better connected to take advantage of state and federal resources set aside for CBOs to participate in providing services for their niche markets.

In New York State, money has been allocated to hire and train people from areas affected by sickle cell ro become Community Health Workers (CHWs). This funding has been going to hospitals instead of community organizations “serving” the sickle cell community. There has been a lot of grumbling about these allocations. However, most organizations are ill-prepared to receive and adequately utilize this type of funding. Many SCD-CBOs are run voluntarily part-time, wuthout a dedicated staff or office. The organizations are being operated from the founder’s home or donated space.

If CBOs in a town or metro area worked in solidarity, their collected human resources could manage to acquire tangible assets like a co-work space, administrative support, and coordinated marketing to distribute critical messages about axailable services.

Another benefit of collaboration is flow-through funding from government and public foundation grants. No entity is going to fund two or three separate organizations in the same municipality, and will often recommend that these applicants combine efforts in order to be cinsidered for the funding. This free money is often lost because founders or executive boards feel something is being taken from them. The lesson not learned is that as a community organization, the first consideration is the community you say you are serving, not your ego and your own interests.

Take a moment to reframe your thinking about other advocate organizations as your competitors. Community service is not a competition.

Collaboration is crucial and together so much can be accomplished.

Alicia Hyndman, (D) # Assembly District in Queens, NY, co-sponsored a Sickle Cell Treatment bill which will allocate $3 million towards establishing treatment centers and hiring Community Health Workers to provide public education and support to affected families. This is an OPPORTUNITY!

In Solidarity, community organizations can lobby for a portion of the funds to be allocated to CBOs to hire qualified member as CHWs.

Benefits:

• The money comes into the town.
• Employment opportunities become available.
• CBOs working in Solidarity can expand individual and collective missions in providing support services to individuals living with SCD and their families.
• More individuals and families impacted by SCD receive needed services.

Solidarity Advocacy = Win-Win Proposition

Stop Making the “Struggle” Real!

This is an attempt to start a solution-oriented conversation. There isn’t any more time for gripping or blaming others for the lack of resources within the sickle cell community. We all know what the problems are, so let’s have a serious dialog about practical solutions and be committed to implementing measurable strategies that will produce quantifiable results.

On the flip side of the same coin, the community has to also commit to supporting the efforts of the CBOs. Invest your time, skills, talents and passion towards helping the organization of your choice and facilitating its collaboration.

Here are some things community members/volunteers can provide to support Solidarity:

• Administrative support — creating a database or cleaning up an existing one, make calls, send out emails, and conduct research.
• Create content — write for the organization’s blog, forum, newsletter, and social media.
• Fundraise — assist in the coordination of annual events, crowdfunding or annual campaigns, and implement passive fundraising activities that don’t require a lot of effort or time (ink cartridge collection).
• Publicity — help get the word out through press releases, media alerts, stories, digital marketing, and video promos (everyone’s smartphone has a camera and a video app).
• Recruitment — rally more volunteers, member, and donors.
• Political Action — nonprofit organizations, are limited in the time and type of political advocacy it can be involved in. Individuals have no such limitations.
• Get Out The Vote — make sure all community members’ 18-years of age and older are registered to vote. Inform the community about policies that can impact us collectively, how to vote on each piece of legislation, and most importantly, that they make it to the poll to vote.

This the beginning of an open conversation. It is vital that we begin to talk and be heard. Discussions need to be purposeful, respectful and need to stay on topic. The past is irrelevant. Be present and look towards the future. With this in mind, growth and sustainably of community organizations that serve the sickle cell population will be steady.

September is National Sickle Cell Disease Awareness Month. Break the Silence — Talk About Sickle Cell.

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