Back in September, the fuel pump on Cynthia Barnes’ car gave out, leaving the single mother of two with no way to get her daughter to her next doctor’s appointment.

For two months, this was the case, but they eventually got back on track, easing back into a monthly routine: a three-hour drive from their home in Tifton to Augusta University Medical Center.

It’s a long ride but a necessary one. Barnes’ 11-year-old daughter has sickle cell disease, and Augusta is the closest facility offering comprehensive care for those with the blood disorder.

Other sickle cell patients should be so lucky.

According to the latest Sickle Cell Data Collection program brief, many children with sickle cell disease and their families not only face long drives to health care providers, they have limited access to doctors who can provide the specialized treatment they need.

It’s a problem that can mean more than a few missed checkups. It can mean forgoing crucial treatments like badly needed blood transfusions.

Currently, there are four cities in Georgia with pediatric sickle cell disease centers that offer daily care: Atlanta, Augusta, Macon and Savannah. Six additional sites offer periodic specialty clinics, typically one day a month.

Doctors didn’t expect Marqus Valentine to live past age 5. The prognosis was so certain that the Valentine family was granted a free trip to Universal Studios to the set of “The Ghostbusters” from a foundation as a dying wish.

Although Valentine beat those odds, his troubles didn’t stop. Diagnosed with sickle cell disease as a baby, he repeated kindergarten because of missing a lot of school due to lengthy hospitalizations and even had a stroke in fourth grade during class, he said.

Growing up during the height of the AIDS epidemic, his classmates didn’t want to play with him because they thought Valentine was contagious. Invitations to birthday parties stopped, and as he got older, he spent the rest of his childhood years receiving monthly blood transfusions, as well as other treatments.

“My peers, no one understood sickle cell,” said Valentine.

The disease is complex physiologically, manifesting itself differently in every carrier, but also sociologically, bringing in factors like racial bias, since sickle cell is believed to be most common among minority groups, particularly African Americans. Historically, there has been limited funding and research dedicated to sickle cell disease, evidenced by only one FDA-approved drug available to the community until last month. The landscape for adults who have sickle cell is much harder than that for children with the illness, and black men specifically may have a harder time dealing with the condition because of existing stereotypes preceding them. A lack of resources for a disease that primarily affects a marginalized community, coupled with negative perceptions of African American males, can exacerbate the navigation of an already complicated, painful disease.

Rare family, we are back in person! The 2022 Living Rare, Living Stronger Patient and Family Forum will bring the rare disease community together in Cleveland, Ohio for a day of learning, networking, discussion, and the Rare Impact Awards, presented live at the incredible Rock and Roll Hall of Fame in downtown Cleveland!

The health, safety and comfort of attendees and the rare community are NORD’s number one priority, so please review our event guidelines and check back often for more information and updates from the NORD team.

Date:

June 26, 2022

Location:

InterContinental Cleveland Conference Center

9801 Carnegie Avenue

Cleveland, Ohio, United States

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January 16, 2020
2:00 – 3:00 PM ET

We welcome interested stakeholders, patients, advocates, caregivers and families to join a webinar providing information about the metric used to assess the value of health care treatments called the quality-adjusted life year or “QALY” as well as the primary organization conducting QALY-based value assessments called the Institute for Clinical Economic Review (ICER). Because ICER will assess the value of new sickle cell disease treatments in March, 2020, it is important for all stakeholders to understand QALYs, ICER and how those value assessments may be used by public and private payers in their decisions related to drug coverage and formularies.
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We are excited to have Sara van Geertruyden with the Partnership to Improve Patient Care (PIPC) join us to present information about QALYs and ICER. Other stakeholders will provide specific information about their experience with ICER so far as they determine the scope of their upcoming report, the sickle cell disease treatments under review, and an overview of treatments in the development pipeline.

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Helen Obando, a shy slip of a girl, lay curled in a hospital bed in June waiting for a bag of stem cells from her bone marrow, modified by gene therapy, to start dripping into her chest.

The hope was that the treatment would cure her of sickle cell disease, an inherited blood disorder that can cause excruciating pain, organ damage and early death.

Sedated with Benadryl to prevent an allergic reaction to the garlicky-smelling preservative in the drip, Helen, who at 16 was the youngest person ever to undergo the therapy, was sound asleep for the big moment.

“Wake up,” her younger brother, Ryan, said, shaking her leg so she could push the button to start the drip. But she could not be roused, so he pushed it himself.

During this interactive live webinar, instructor Ryan Drozd will offer some insights into the benefits of yoga for chronic pain and how to find a studio and classes that are appropriate for your health situation. He’ll also lead participants in a 20-minute chair yoga session, which is suitable for all levels of ability.

More about Ryan:
Ryan Drozd is a National Academy of Sports Medicine-Certified Personal Trainer and Fitness Nutrition Specialist, RYT-200 Yoga Alliance Teacher, Licensed Massage Therapist, and Reiki Master. He has been coping with chronic upper back pain, neck pain, and rib pain for over seven years, which led him to begin learning anything and everything related to wellness. His goal is to provide others with viable options for pain relief through sharing his personal experiences. In his spare time he enjoys reading, yoga, cooking, and almost anything outdoors. Ryan is also an ambassador for the U.S. Pain Foundation.

When:
Tuesday, Jan 21, 2020
1:00 PM - 2:00 PM EST

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E.S.C.A.P.E. (Empowering Sickle Cell Adults through Patient Empowerment) Retreat is a unique and one of a kind holistic health experience for sickle cell adults. It is held every February.

ESCAPE Retreat will be starting on Friday, February 5, 2021, and end on Sunday, February 7, 2021. It will be entirely virtual this year due to COVID-19 restrictions.

Our training program covers the core competencies of community health workers, and includes additional concentration on sickle cell disease. Virtual lectures, online in-class assignments and homework provide a wide array of learning opportunities.

Sickle Cell Disease Community Health Worker Training
September 13, 2021 – November 29, 2021

Deadline to apply: September 3, 2021

Cost of Training: $1,060

A limited number of scholarships are available.

The course is offered completely online. At the conclusion of the course, students must pass a final exam.

Click here to signup online.

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Cost: Free
Monthly sessions
12–1 p.m. EST
Zoom online training

The P.O.W.E.R ECHO Project Community Health Worker Training is designed to assist community health workers with resources and education, in order to strengthen their efforts in providing support services for sickle cell disease (SCD) patients. P.O.W.E.R ECHO Project uses the ECHO telecommunication model to reach community health workers by offering online training services on emerging and current topics in sickle cell disease.

The P.O.W.E.R. training for Community Health Workers (CHWs) is designed to provide CHWs working in the SCD community with further resources and educational tools to strengthen their efforts in providing supportive services for sickle cell disease patients and their families.

The P.O.W.E.R ECHO Project uses the ECHO telecommunication model to bridge CHWs from various regions in professional development sessions focused on current and emerging sickle cell disease topics through training and case study discussions.

Upcoming Session:

Thursday, March 21 | 12-1 p.m. EST
Topic: CHW in the Virtual Space with Patients with No Internet Access
Monica Rockwell, Executive Director, SWGA Sickle Cell Awareness
Click here to register

This one-day conference will provide helpful information that can lead to better health for those affected by sickle cell trait.

When:

Friday, September 25, 2020

Live on Facebook

9:00 AM - 12:30 PM

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