April Johnson Stearns, Founder, and Editor-in-Chief, of WILDFIRE Magazine is leading a workshop for anyone interested in using their voice to advocate for themselves and others in a meaningful and effective way. This writing workshop is dedicated to the would-be movers and shakers advocating for themselves and others.

Maybe you have an idea to design a product, make a movie, work to change some legislation, or organize a fundraiser -- advocacy comes in as many shapes and sizes as there are people in our community - and all are needed. (If you’re already doing this work, you’re welcome here, too!)⁠
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The first step is to find your voice to tell your own story -- and that's what this workshop will help you do, as well as begin the work of identifying the advocacy that comes naturally to you.

About WILDFIRE Magazine:
April launched WILDFIRE Magazine as a way to create community through personal storytelling as it pertains to young women diagnosed with breast cancer. She wanted to help others heal through the reading and writing of stories. WILDFIRE is a gorgeous ad-free print and digital magazine. Each issue tells the stories of 30+ women diagnosed under 45 years old from all over the world.

This event has ended.

Penicillin VK solution is suffering from intermittent supply shortages. This can affect children with sickle cell disease. Penicillin VK in liquid form is prescribed for babies and young children with sickle cell disease who are unable to swallow pills as standard care, twice a day, starting as early as 6-8 weeks of age. Children less than 3 years of age should receive oral penicillin 125 mg twice daily, and the dose should be increased to 250 mg twice daily for children older than 3 years.

The Sickle Cell Disease Association of America, Inc., joins the Foundation for Sickle Cell Disease Research (FSCDR) in condemning the use of sickle cell disease (SCD) as a punchline on the HBO Max show Velma. For the over 100,000 Americans impacted by sickle cell and their families, this disease is anything but a laughing matter. Stereotypes and misinformation reinforced by media clips such as this have real-life consequences.

Sickle cell patients struggle to be taken seriously and receive proper care, even when they present with life-threatening symptoms in the emergency room. As we work to change the perception of sickle cell and increase education surrounding this condition, insensitive and inappropriate jokes like these work against progress and contribute to the spread of misinformation. We must do better and encourage people to treat rare diseases with the respect they are due. #SickleCellIsNotAJoke

We're excited to share the first article in our new CMO Speaks blog! Join us as members of SCDAA's clinical leadership team share their thoughts on hot topics in the SCD community. In this issue, SCDAA Chief Medical Officer Dr. Lewis Hsu discusses fertility care and SCD with input from Dr. Lydia Pecker.

NPR recently produced this segment with sickle cell warrior and advocate Teonna Woolford on fertility care and SCD. This is an underdiscussed topic and an important aspect of sickle cell care. We congratulate Teonna and the Sickle Cell Reproductive Health Education Directive (SC RED) for getting this message out, and we are grateful for the attention from NPR.

Individuals suffering with rare diseases had very few therapeutic options 40 years ago. But that began to change with the stroke of a pen by then-President Ronald Reagan in January 1983 when he signed the bipartisan Orphan Drug Act into law. On Jan. 4, the rare disease community will celebrate the 40th anniversary of the Orphan Drug Act (ODA) — legislation that incentivized drug companies to put more resources toward the research, development, and distribution of therapeutics for people with rare diseases, who until then had been ‘orphaned’ by the medical and scientific community.

The creation of the ODA and the founding of the National Organization for Rare Disorders (NORD) are forever intertwined. The rare patients and caregivers who started the rare advocacy movement — which convinced lawmakers to introduce orphan drug legislation — knew their work was not done after the bill became law. They formed NORD to unify the voices of the unheard within the rare disease community under the premise that a rising tide could lift all boats.

To underscore the importance of understanding and getting tested for the sickle cell trait (SCT), the Cayenne Wellness Center has launched a campaign targeting California’s students, school athletes, parents, and educators.

The five-year Sickle Cell Trait Awareness Campaign will offer resources that will help educate people about SCT and its risks. Such resources will provide information about where people can go to get tested for the trait and find local support, as well as information about SCT and education, fitness, and nutrition.

Specifically, the effort is aimed at California’s students and athletes, from middle school through college, as well as parents, teachers, and student athlete coaches. To spread awareness, the campaign will use social media, emailed newsletters, billboards, flyers, radio spots, public service announcements, newspapers, and bus wraps.

We can’t advance sickle cell treatment without clinical trials. That’s why SCDAA are pleased to announce the formation of the SCD C.A.R.E.S. (Collaboration of Advocates for Research, Education and Science) Consortium. SCDAA established this initiative to educate the community about the importance of clinical trials and connect patients through their clinical trial finder. SCDAA encourages you to explore these resources today!

Hello Partners in Advocacy!

The Sickle Cell/Thalassemia Patients Network (SCTPN) on behalf of all of the other sickle cell disease (SCD) community organizations are circulating a letter to the Chairs of the Assembly and Senate Health Committees for support of the Sickle Cell Disease Education and Detection bill S1839.

The letter requests that the state leaders dedicate $750,000 to educating health professionals and the public about sickle cell trait and disease. It will also provide funding to community-based organizations in the Fiscal Year 2023-24 to expand public outreach and education efforts.

SCTPN are inviting organizations who care about rare and chronic diseases and improving the quality of life for those who are impacted to sign on to the letter linked below.

If your organization supports the Senate Bill S1839 (Sanders), email "Yes, I Support" to Ginger Davis gdavis@sctpn.net or Ashley Thompkins at Ashley.thompkins@sctpn.net.

Organization and Individual names will be listed on the letter. Please email your organization logo to include with the letter.

Victoria Gray's life has been transformed by her treatment for sickle cell disease with the gene-editing technique called CRISPR. She's in London telling her story at a scientific summit.

Wednesday, June 28
1-4 pm EDT
Massachusetts State House
24 Beacon Street
Boston, MA 02133

Join the Massachusetts Sickle Cell Association for an eye-opening discussion about racism and the impact on those living with sickle cell disease. This is a must-attend event for anyone in the New England region interested in health care disparities and social justice.