Maya McFadden Photo
Sharon Jones McCann, Malcolm Welfare, Jorge Lopez, Theodore Brooks, James Flaherty, and James Rawlings outside Michelle’s House, the renovated, once-abandoned Victorian at 1389 Chapel St.
A pitch for support for government money turned into a rapid-fire virtual grassroots fundraiser, with Dwight neighbors deciding to dig into their own pockets to help prevent sickle cell disease.
The pitch-turned-fundraiser occurred Tuesday evening at the online monthly Dwight Community Management Team.
Michelle’s House Executive Director James Rawlings attended the meeting to ask for a letter of support for an upcoming application for a city allocation of federal block grants. At the same time, he thanked the members for their team-wide donation the previous year to Michelle’s House.
Michelle’s House is the first community center in the northeast dedicated to sickle cell disease education, prevention and support.
“That was the first time any management team has out of their own pockets decided to support sickle cell,” Rawlings said. “It’s not just the monetary contribution. It’s that it came out of your own pockets to help a disease that has been so unattended to.”
James Rawlings making Tuesday night’s pitch: Black lives matter.
“The pharmaceutical industry is not interested in putting resources into sickle cell. Many patients are on Medicaid, so it’s not a highly reimbursable disease. There’s not much money in it. There are only 100,000 individuals in the country and they are mostly Black and brown,” Rawlings said.
“We have to stop and take care of our children. Dwight has led that over the past few years. People say ‘Black Lives Matter.’ This is Black Lives Matter.”
Michelle’s House is asking for $42,000 from New Haven’s share of federal Community Development Block Grant (CBDG) dollars this year to continue its education and prevention mission. This will include testing for the sickle cell genetic trait and genetic counseling if two individuals with the trait decide to have children. (Their child has a 25 percent chance of having the disease.)
Neighbors flooded the chat section of Tuesday evening’s online meeting with messages of support for Michelle’s House, including a story of a relative with the disease. It was soon settled that Dwight would send a letter of support to help Michelle’s House with its CDBG application.
Then came the personal pledges.
Dottie Green issues $500 challenge.
Neighbor Dorthula Green first issued the fundraising challenge, promising a $500 matching grant to Michelle’s House based on other management team donations. Dwight Secretary Tabitha Sookdeo added that anyone wanting to make a donation could make their commitment in the chat and the team would follow up to coordinate with them.
The pledges bubbled up in the chat. Jane Comins and Pat Wallace each wrote $20 pledges. Alder Frank Douglass offered $200. Sookdeo and fellow Dwight team member Richard Crouse pledged a combined $100. Within five minutes, the team was $160 away from Green’s match goal.
Neighbor Sheila Shanklin spoke about the importance of managing the disease and conquering the mental strain it brings.
“I wanted to encourage anyone who feels they have it [the genetic trait] — whatever the doctors tell you to do, please do it. It’s the only thing that can help with the disease. I know. I know it does hurt. People don’t know how much it hurts,” Shanklin said. “You can’t give into this disease.”
Three other nonprofits pitched a variety of CDBG projects for student mental health care, housing and career development for the formerly incarcerated. All three organizations — Clifford Beers, Continuum of Care and The Connection — won letters of support from the neighborhood.
Sickle cell disease, which is painful and life-threatening, affects African Americans at the highest rate in the U.S. One in 13 Black babies have one sickle cell gene, with usually no symptoms; one in 365 has both genes and has to manage the pain and complications of the disease. It generally exists in regions where malaria is or was widespread and may have originated as a protection against severe forms of malaria.
Despite a century of knowledge on the subject, there is no widely accessible cure for sickle cell. Sickle cell patients get only a fraction of the treatment options and care networks that are available for cystic fibrosis, a comparable disease that primarily affects white Americans. Research funding dedicated to the two diseases is wildly unequal.
It's a wonderful thing when people come together to help others.