Category Archives: News

GBT and SCDAA Kick Off “Lift Every Voice to Shine the Light on Sickle Cell”

May 04, 2021 at 8:00 AM EDT
SOUTH SAN FRANCISCO, Calif. and HANOVER, Md., May 04, 2021 (GLOBE NEWSWIRE) —In recognition of World Sickle Cell Day, which falls on June 19, 2021,Global Blood Therapeutics, Inc. (GBT) (NASDAQ: GBT) and the Sickle Cell Disease Association of America, Inc. (SCDAA) today launched “Lift Every Voice to Shine the Light on Sickle Cell” – a contest that will feature original spoken word pieces to raise awareness of sickle cell disease (SCD). The contest, which aims to elevate the voices and experiences of people living with SCD and their caregivers, is presented by Sickle Cell Speaks, GBT’s SCD education campaign that highlights authentic stories of those living with SCD to dispel misconceptions about the disease.
“People with sickle cell disease possess an incredibly rich and diverse array of creative abilities, often used to express the physical and emotional burden of living with this complex and devastating disease,” said Beverley Francis-Gibson, M.A., president and CEO of the SCDAA. “Celebrating these voices is critical as we work to overcome the legacy of stigma and misinformation that have a direct impact on health outcomes. We are proud to partner with GBT to shine the light on the challenges that SCD warriors face with strength and resilience.”
Spoken word poetry is an art form rooted in traditions of storytelling to convey compelling messages and personal experiences. People living with SCD and their caregivers are invited to sign up to submit videos of themselves performing original spoken word pieces about their experience with SCD. To learn more about the contest details and how to submit a video, please email patientevents@sicklecellspeaks.info or visit www.facebook.com/SickleCellSpeaks. Participants must sign up by May 24, 2021, and be U.S. residents. For each eligible submission received, GBT will donate $100 to the SCDAA, up to a total donation of$5,000. The contest winner will be featured in a GBT event at the SCDAA Annual Convention in October 2021. “Shine the Light on Sickle Cell” is a collaboration between SiNERGe and SCDAA.
“GBT is proud to partner with SCDAA to recognize the many inspiring voices within the sickle cell community who have rallied for progress in the face of tremendous health and societal challenges over the last year,” said Jung E. Choi, chief business and strategy officer, and head of patient advocacy and government affairs at GBT. “People with SCD suffer from a terrible, life-threatening disease that is made worse by being subjected to racial bias. We reiterate our commitment to shining a brighter light on the inequities these patients encounter and will continue working with all our partners to ensure access to the high-quality care patients deserve.”
Performances by the spoken word contest winner and finalists will be featured in a virtual event on Friday, June 18, 2021, at 4:00 p.m. PT and Saturday, June 19, 2021, at 12:00 p.m. PT on the Sickle Cell Speaks Facebook and Instagram pages. The event will be hosted and feature performances by three SCD advocates who are passionate about using spoken word to educate and inspire change:

  • Charly Richard, musician and writer
  • DeMitrious Wyant, musician and entrepreneur
  • Candis St. John, nurse and poet

About Sickle Cell Disease
Sickle cell disease (SCD) affects an estimated 100,000 people in the United States,1 an estimated 52,000 people inEurope,2 and millions of people throughout the world, particularly among those whose ancestors are from sub-Saharan Africa.1 It also affects people of Hispanic, South Asian, Southern European, and Middle Eastern ancestry.1 SCD is a lifelong inherited blood disorder that impacts hemoglobin, a protein carried by red blood cells that delivers oxygen to tissues and organs throughout the body.3 Due to a genetic mutation, people with SCD form abnormal hemoglobin known as sickle hemoglobin. Through a process called hemoglobin polymerization, red blood cells become sickled – deoxygenated, crescent-shaped, and rigid.3-5 The sickling process causes hemolytic anemia (low hemoglobin due to red blood cell destruction) and blockages in capillaries and small blood vessels, which impede the flow of blood and oxygen throughout the body. The diminished oxygen delivery to tissues and organs can lead to life-threatening complications, including stroke and irreversible organ damage.4-7
About SCDAA
Sickle Cell Disease Association of America(SCDAA) advocates for people affected by sickle cell conditions and empowers community-based organizations to maximize quality of life and raise public consciousness while advancing the search for a universal cure. The association and more than 50 member organizations support sickle cell research, public and professional health education and patient and community services. Visitwww.sicklecelldisease.org.
About Global Blood Therapeutics
Global Blood Therapeutics(GBT) is a biopharmaceutical company dedicated to the discovery, development, and delivery of life-changing treatments that provide hope to underserved patient communities. Founded in 2011, GBT is delivering on its goal to transform the treatment and care of sickle cell disease (SCD), a lifelong, devastating inherited blood disorder. The company has introduced Oxbryta®(voxelotor), the first FDA-approved treatment that directly inhibits sickle hemoglobin polymerization, the root cause of red blood cell sickling in SCD. GBT is also advancing its pipeline program in SCD with inclacumab, a P-selectin inhibitor in development to address pain crises associated with the disease, and GBT021601 (GBT601), the company’s next-generation hemoglobin S polymerization inhibitor. In addition, GBT’s drug discovery teams are working on new targets to develop the next wave of treatments for SCD. To learn more, please visit www.gbt.com and follow the company on Twitter @GBT_news.
References

  1. Centers for Disease Control and Prevention website. Sickle Cell Disease (SCD). https://www.cdc.gov/ncbddd/sicklecell/data.html. Accessed June 3, 2019.
  2. European Medicines Agency.https://www.ema.europa.eu/en/medicines/human/orphan-designations/eu3182125. Accessed June 12, 2020.
  3. National Heart, Lung, and Blood Institute website. Sickle Cell Disease. https://www.nhlbi.nih.gov/health-topics/sickle-cell-disease. Accessed August 5, 2019.
  4. Rees DC, et al. Lancet. 2010;376(9757):2018-2031.
  5. Kato GJ, et al. Nat Rev Dis Primers. 2018;4:18010.
  6. Kato GJ, et al. J Clin Invest. 2017;127(3):750-760.
  7. Caboot JB, et al. Paediatr Respir Rev. 2014;15(1):17-23.

GBT Contact Information:
Steven Immergut
650-410-3258
simmergut@gbt.com
SCDAA Contact Information:
Emma Day
eday@sicklecelldisease.org
Kyri Jacobs
kjacobs@sicklecelldisease.org

Download PDF | Visit the GBT Website  

SCDAA partners with Sickle Cell Community Consortium

Sickle Cell Disease Association of America partnered with the Sickle Cell Community Consortium to advocate for legislation benefiting people with sickle cell disease and their families. The partnership includes collaboration on the association’s annual advocacy day initiatives, meetings and trainings and in developing federal legislative priorities.
“Sickle Cell Disease Association of America and the Sickle Cell Community Consortium share the same mission of improving the lives of people with sickle cell disease,” said Beverley Francis-Gibson, president and CEO of the Sickle Cell Disease Association. “We’re excited to work with the consortium, which brings a range of organizations, advocates and advisers that will help us achieve our legislative goals together.”
A nonprofit formed in 2014, the Sickle Cell Community Consortium consists of sickle cell community organizations, patient and caregiver advocates, community partners and medical and research advisers working together to represent people with sickle cell disease. The consortium identifies and implements strategies and partnerships to address needs in the sickle cell community.
Sickle Cell Disease Association of America’s annual advocacy day, supported by the partnership between the association and consortium, generates public awareness of sickle cell disease and kickstarts momentum to push for legislative reform. The day provides training, resources and guidance to participants interested in advocacy work.  

SCDAA Launches New Educational Materials to Support Children’s Blood Transfusion

Sickle Cell Disease Association of America, Inc. (SCDAA) and Hemanext Inc., a privately held medical technology company dedicated to improving the quality, safety, efficacy and cost of red blood cell (RBC) transfusion therapy, today announced the launch of new educational material to help SCDAA deliver on its mission and meet its goals. Hemanext has sponsored the creation of a set of educational materials, one for a child and one for a caregiver, to educate on blood transfusions. This collaboration is part of SCDAA and Hemanext’s partnership, which began in 2020.
Sickle cell disease (SCD) affects 100,000 individuals in the United States, disproportionately affecting African Americans. SCD occurs in about one in 365 Black or African American births.1 The genetic disease is associated with serious, life-threatening complications, including stroke and acute chest syndrome (ACS).2,3 As result, people with SCD often require chronic red blood cell transfusions,2 which for some patients is a life-saving therapy.3
Children and parents may experience anxiety because they are unaware of the process to receive a blood transfusion. The goal of these two educational materials is to inform and empower patients and their caregivers about this important therapy. SCDAA will make these the resources available to the sickle cell community.
“During a review of our currently available educational resources, we identified the opportunity to help young sickle cell warriors prepare for their transfusions,” said SCDAA President and CEO Beverley Francis-Gibson. “We appreciate that Hemanext has stepped up to help us fill this information need and make a difference breaking the sickle cycle.”
“It is a privilege to continue our partnership with Ms. Francis-Gibson and her dedicated team at SCDAA, the premier sickle cell organization,” said Hemanext President and CEO Martin Cannon. “We are committed to helping SCDAA achieve its mission and enhance the lives of members of the sickle cell community.”
“As we enter the second year of our alliance, we will continue to look for ways to support SCDAA, patients, and families during these difficult times,” said Alex Marichal, VP, Marketing, Hemanext. 
ABOUT SCDAA
SCDAA’s mission is to advocate for people affected by sickle cell conditions and empower community-based organizations to maximize quality of life and raise public consciousness while advancing the search for a universal cure. Visit www.sicklecelldisease.org.
ABOUT HEMANEXT
Hemanext’s mission is to help patients enjoy healthier lives through safer transfusions. Hemanext’s technology is a processing and storage system that is designed to remove the fuel for oxidative damage to red blood cells. Hemanext is focused on supporting clinicians and healthcare practitioners who prescribe life-saving RBC transfusions to their patients. Visit Hemanext.com to learn more.

  1. Data & Statistics on Sickle Cell Disease. Centers for Disease Control and Prevention. https://www.cdc.gov/ncbddd/sicklecell/data.html. Accessed March 19, 2021.
  2. Understanding Sickle Cell Disease. American Society of Hematology, 2019. Available at https://www.hematology.org/education/clinicians/guidelines-and-quality-care/clinical-practice-guidelines/sickle-cell-disease-guidelines. Accessed March 23, 2021.
  3. Chou ST, Fasano RM. Management of Patients with Sickle Cell Disease Using Transfusion Therapy: Guidelines and Complications. Hematology/oncology Clinics of North America. 2016 Jun;30(3):591-608. DOI: 10.1016/j.hoc.2016.01.011.

 

Temporary Suspension of Clinical Trials


March 1, 2021 – The Sickle Cell Disease Association of America’s Medical and Research Advisory Committee (MARAC) is aware of the announcement on February 16, regarding the temporary suspension of bluebird bio clinical trials of LentiGlobin Gene Therapy for Sickle Cell Disease and the pause of all commercial use of bluebird bio European gene therapy.
Additionally, on February 22, the National Heart, Lung, and Blood Institute (NHLBI) temporarily suspended their unrelated gene therapy trial — Pilot and Feasibility Study of Hematopoietic Stem Cell Gene Transfer for Sickle Cell Disease at Boston Children’s Hospital. The NHLBI stated that this temporary suspension was, “out of an abundance of caution” despite having no indications of harm.
On February 23, another gene therapy trial, Gene Transfer for Patients with Sickle Cell Disease, was also paused by the sponsor Aruvant.
MARAC has investigated the situation and met with bluebird bio to discuss the information available to the public. In the bluebird bio study, two patients developed blood cancer, and a third patient is under investigation for a related problem called myelodysplastic syndrome. The details of these patients are being examined by their doctors and the bluebird bio sponsors. Investigations are trying to determine whether the blood cancer can be linked to the gene therapy vector, the chemotherapy preparation for gene therapy, or damage of the host stem cell. No events occurred in the other clinical trials.
We value patient trust and patient concerns. SCDAA tries to express the voice of people living with sickle cell disease (SCD), and MARAC supports this mission with biomedical expertise. MARAC is monitoring developments and will continue to communicate findings to the SCD community. Nearly all the members of MARAC are involved in research to help those with SCD, and some who participated in developing this advisory statement are gene therapy investigators. The MARAC members with a potential conflict of interest due to their involvement in gene therapy clinical trials are in the full statement linked below.
MARAC acknowledges that there has been a history of clinical investigations that were unethical, including the infamous Tuskegee syphilis study, but this past week’s events highlight that clinical research is no longer in that era. The modern safeguards for clinical research are working. Preplanned “stopping rules” triggered a “pause” of enrollment by bluebird bio when unusual and concerning events occurred. The Data Safety and Monitoring Board for the NHLBI gene therapy study followed “out of an abundance of caution,” as did the Aruvant study. There were public announcements, and an intensive investigation is now underway to gather more information. The participants in the studies are being notified and are receiving appropriate medical care from the investigators.
Clinical research has been and continues to be the path for progress to improved SCD survival and quality of life. MARAC celebrates the decades of clinical research studies on which the progress in sickle cell care that we have today has been built — including penicillin, hydroxyurea, stroke screening and new medications.
SCDAA honors the SCD warriors who volunteer in clinical research. They have given their time so that others may benefit from new future treatments and cures. We pay tribute to all of those who have been lost to SCD, and we know many have died too young.

Statement from SCDAA MARAC


February 16, 2021 – We are aware of the announcement today from bluebird bio regarding the temporary suspension of the clinical trials of its LentiGlobin Gene Therapy for Sickle Cell Disease (bb1111). We have investigated the situation, and we have met with bluebird bio to discuss the information available to the public. MARAC is monitoring developments, and we will continue to communicate our findings to the community of people living with sickle cell disease (SCD).
SCDAA honors the SCD warriors who volunteer in clinical research. They have given their time so that others may benefit from new future treatments and cures.
We pay tribute to all of those whom we have lost to SCD, as we know many have died too young. We understand that clinical research is the path for progress to improved survival in SCD.
Click here to view a full list of the SCDAA Medical and Research Advisory Committee Members and download this statement.
 

MARAC Advisory Statement: COVID-19 Vaccines

Download the MARAC Alert | Download Spanish Translation | Download French Translation
December 14, 2020 – News is evolving rapidly about COVID-19 and COVID-19 vaccines. Early results from the COVID-19 vaccine trials are very promising, although the true benefits and risks will not be known until a larger number of people receive the vaccine.
The Centers for Disease Control and Prevention (CDC) lists sickle cell disease (SCD) as one of the populations vulnerable to severe COVID-19. Sickle cell disease raises the risk for serious problems with COVID-19, especially when compared to the same age in the general population.
What about side effects?
Side effects from the vaccine are possible. Reported side effects include redness and soreness at the injection (shot) site, headache, fever and body aches. These side effect symptoms go away after a few days. The second injection may have more of these side effects than the first injection, but they also went away after a few days. Two severe allergic reactions were reported and seemed to occur only in people with a history of severe life-threatening allergies.
Based on current information, MARAC recommends that people with sickle cell disease receive COVID-19 vaccination.

  • The benefits of vaccination outweigh the risks for people with SCD. Vaccination is worthwhile compared to the risks of having COVID-19 disease in people with SCD.
  • Consult with your doctor or health care team about whether your personal medical condition causes an exception to this general recommendation. Key risk conditions for the vaccines made by Pfizer and Moderna (mRNA vaccines) are a history of life-threatening allergic reactions to polyethylene glycol
    (PEG), another vaccine or other injectable medicine.
  • The fact that SCD affects the immune system should not cause a safety problem for COVID-19 vaccines.
    If a clinical trial is available, consider joining so that we can understand how vaccines or treatments work best for people with SCD.
  • Don’t relax your precautions right after getting the vaccine. You might still get infected in the few weeks following vaccination. You could still give infection to those around you. Continue to wear a mask covering your nose and mouth. Wash your hands often. Maintain physical distance. Avoid crowds, and avoid people who are ill.

Frequently Asked Questions based on CDC information as of 12-13-2020
Is a booster dose of vaccine necessary? Can I get two doses of two different kinds of vaccine?
We don’t really know. The testing was done with two doses of each vaccine so that is the recommended plan. Getting just one dose or a mixture of two vaccines might be a waste of the shot and leave you with incomplete protection. The v-safe smartphone app will remind you when it is time to get the second dose.
If I had COVID-19 disease should I still get a vaccination against COVID-19?
Probably yes, but wait until your isolation period is over. Talk to your doctor.
If I just had COVID-19 exposure, should I still get a vaccination against COVID-19?
Probably yes, but after a quarantine period. Talk to your doctor. If you live in a group setting, it might be worthwhile to protect others by getting the vaccine without waiting for quarantine to end.
How is the safety of these vaccines being tracked?
v-safe is a smartphone-based tool that uses text messaging and web surveys to provide personalized health check-ins after you receive a COVID-19 vaccination. This will allow you to quickly share any vaccine side effects with the CDC.
I have some allergies. What allergy history is worrisome?

  • Key risk conditions for the mRNA vaccines are a history of life-threatening allergic reactions to components of the vaccine, to another vaccine or injectable medicine, or allergy to polyethylene glycol (PEG). Talk to your doctor. You might need to be deferred from the mRNA vaccine, or just monitored for 30 minutes after the injection.
  • Allergic reactions that were not life-threatening and allergies to food, insects, oral medications, dust, or pollen are probably OK for the mRNA vaccines. Talk to your doctor. You should be watched for at least 15 minutes after the vaccine.
  • Talk to your doctor.
  • Sign up for v-safe from your smartphone’s browser at vsafe.cdc.gov.

Click here to view a full list of the SCDAA Medical and Research Advisory Committee Members and download this advisory.
 

Sickle Cell Disease Association of America and Aruvant Sciences Forge New Partnership to Educate Around Gene Therapy

The Sickle Cell Disease Association of America (SCDAA) and Aruvant Sciences are proud to announce a new partnership to create educational programs to increase awareness of gene therapy as a potential curative treatment option for sickle cell disease patients. This collaboration will help SCDAA continue to deliver on its mission, while assisting Aruvant in learning more about the needs of sickle cell disease (SCD) patients. Under the agreement, Aruvant will collaborate with SCDAA to host local and national educational events and develop materials for a public-awareness campaign.
“In partnership with SCDAA, we are working to educate patients about gene therapy, while gaining critical insights from the patient community for our ARU-1801 SCD development program,” said Will Chou, M.D., chief executive officer (CEO) of Aruvant. “Now is a perfect time to work with SCDAA to educate the community about gene therapy since we have an open and enrolling phase 1/2 clinical trial for our potentially curative experimental gene therapy, ARU-1801.”
Sickle cell disease affects 100,000 individuals in the United States, disproportionately affecting African Americans with one in 500 African Americans suffering from the disease. This inherited disease affects the production of hemoglobin, a protein in red blood cells that carries oxygen throughout the body. The disease occurs when people inherit a mutation from each of their parents which causes people with SCD to not have normal, healthy adult hemoglobin in their red blood cells and instead have an abnormal hemoglobin called sickle hemoglobin. SCD can cause frequent episodes of severe pain, weakness and other serious complications. Fetal hemoglobin is an “anti-sickling” hemoglobin that is present before birth in the red blood cells. After birth, the gene that makes fetal hemoglobin turns off, which mostly stops the production of fetal hemoglobin. More fetal hemoglobin in the blood can mean fewer episodes of sickling and pain.
“In partnership with Aruvant, we can provide the critical education needed for our community to understand gene therapy and how these promising new treatments work to treat and maybe cure this genetic disease that impacts so many in our community,” said Beverley Francis-Gibson, SCDAA president and CEO. “Partnering with companies like Aruvant is critical to help us support the research that could change the lives of many sickle cell disease patients.”
Aruvant and SCDAA’s educational events will review gene therapy and ongoing research, including discussion around Aruvant’s MOMENTUM study. This clinical trial is examining a one-time investigational treatment, ARU-1801, to increase levels of fetal hemoglobin in patients with severe sickle cell disease, with the hope of fewer episodes of sickling and pain. Aruvant provided funding for SCDAA’s 48th Annual National Convention 2020 which begins tomorrow, October 13, and will continue through October 17. To register, please visit https://bit.ly/SCDAA2020Convention.
   

Sickle Cell Disease Association holds 48th annual national convention virtually

Sickle Cell Disease Association of America will hold its 48th annual national convention virtually this year from Tuesday, Oct. 13, through Saturday, Oct. 17. The four-day multidisciplinary convention addressing sickle cell disease and sickle cell trait draws hundreds of health care professionals, patients, families, community-based organizations, leaders and advocates.
“Our lineup of world-class speakers will present innovative and current best practice strategies and inspire and challenge our thinking about management and care and the latest scientific and clinical information about sickle cell disease,” said Beverley Francis-Gibson, president and CEO of Sickle Cell Disease Association. “There’s something for everyone at our convention this year.”
The keynote and honor lectures will be delivered by:

  • Baba Inusa is a professor of pediatric hematology with Evelina London and Guy’s and St Thomas’ NHS Foundation Trust in the United Kingdom. Inusa will present the Charles F. Whitten, M.D., Memorial Lecture: “Sickle Cell Newborn Screening for Africa Lessons: A Collaborative Initiative.”
  • Brett P. Giroir is an admiral with the U.S. Public Health Service and assistant secretary for health with the U.S. Department of Health and Human Services. Giroir will present the Clarice D. Reid, M.D., Lecture: “Charting a New National Course for Sickle Cell Disease.”
  • Cato T. Laurencin is a professor at the University of Connecticut and CEO of The Connecticut Convergence Institute for Translation in Regenerative Engineering at the University of Connecticut. Laurencin will present “The Interconnectedness of Race and Health: Calling a Spade a Spade.”

Additional convention events include business and grant meetings, exhibit hall presentations, advocacy lectures, clinical trial updates, educational workshops, medical reports, panel discussions, award presentations and social events. Participants will have the opportunity to connect and interact virtually with health care leaders and professionals and gain new relationships, knowledge and resources.
To learn more, see the convention program or register, visit https://bit.ly/SCDAA2020Convention.  

Sickle Cell Disease Association of America Partners with HealthWell Foundation

New Fund Launches to Provide Financial Assistance to People with Sickle Cell Disease
Copayment and Premium Assistance Now Available
(April 15, 2020 – Hanover, MD)  –   The Sickle Cell Disease Association of America is proud to announce its partnership with the HealthWell Foundation®, an independent non-profit that provides a financial lifeline for inadequately insured Americans.  To support the sickle cell community, HealthWell has launched a new fund to provide copayment and premium assistance. Through the fund, HealthWell will provide up to $10,000 in financial assistance for a 12-month grant period to eligible patients who have annual household incomes up to 500 percent of the federal poverty level.
“We are excited that the HealthWell Foundation will provide much needed resources to individuals living with sickle cell disease during this difficult time. I am pleased that they are partnering with SCDAA to support the sickle cell community and reach as many individuals as possible,” says SCDAA President, Beverley Francis-Gibson.
“The HealthWell Foundation is proud to partner with the SCDAA to spread the word about this exciting new fund and to assist people living Sickle Cell Disease in accessing life-changing, sometimes lifesaving, medical treatments they otherwise would not be able to afford,” commented Krista Zodet, HealthWell Foundation President. “Thank you to our dedicated donors for recognizing this critical need and for helping us serve this patient community.”
To determine eligibility and apply for financial assistance, visit HealthWell’s Sickle Cell Disease Fund page. To learn how you can support this or other HealthWell programs, visit HealthWellFoundation.org
About the HealthWell Foundation
A nationally recognized, independent non-profit organization founded in 2003, the HealthWell Foundation has served as a safety net across over 70 disease areas for more than 500,000 underinsured patients. Since its inception, HealthWell has provided over $1.6 billion in grant support to access life-changing medical treatments patients otherwise would not be able to afford. HealthWell provides financial assistance to adults and children facing medical hardship resulting from gaps in their insurance that cause out-of-pocket medical expenses to escalate rapidly. HealthWell assists with the treatment-related cost-sharing obligations of these patients. HealthWell ranked 33rd on the 2019 Forbes list of the 100 Largest U.S. Charities and was recognized for its 100 percent fundraising efficiency. For more information, visit www.HealthWellFoundation.org.
 
About SCDAA
SCDAA’s mission is: To advocate for people affected by sickle cell conditions and empower community-based organizations to maximize quality of life and raise public consciousness while advancing the search for a universal cure. Visit www.sicklecelldisease.org.
About SCD
SCD, an inherited blood disease, causes red blood cells to have a sickle shape. Because of their stiffness and unusual form, blood flow is blocked to different tissues, ultimately damaging them. These sickle-shaped red blood cells contain an abnormal type of hemoglobin, hemoglobin S; normal red blood cells have hemoglobin A. Hemoglobin is important because it helps carry oxygen throughout the body. There is currently no universal cure for SCD.
 
CONTACT:
Jacqueline Burrell
Director of Communications
JBurrell@sicklecelldisease.org