• Event Date: Mar. 13, 2020
• Event Time: 12:00 - 1:00 p.m. ET
• Event Location: Webex

COVID-19 is causing significant concerns globally. During this webinar, the speakers will discuss the ways patient groups can assist their members and other constituents in reducing the impact of COVID-19, such as how patients with chronic diseases can avoid the illness, what to do if they feel sick, and how patient groups can prepare to field inquiries from their members.

Presenters:

• Dr. Albert Rizzo, MD, FACP, Chief Medical Officer, American Lung Association 
• Dr. Stacie Bell, PhD, Chief Scientific & Medical Officer, National  Psoriasis Foundation

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We take the safety and wellness of each and every participant very seriously. This year’s Walk will be a Hybrid 5k event due to the health pandemic. Join us in the park or walk wherever you want. This is also a fun way to get your family out of the house while you exercise, social distance and raise funds for a good cause.

How to Participate!

In-Person

• Join us at Franklin Park Saturday, October 1, 2022

• (Across from Shattuck Hospital) in person from 9:00 AM to 12:00 PM.

• Registration begins at 9:00 AM and the walk kicks off at 10:00 AM. At 11:00 AM we begin our program which will broadcast live via Zoom and Facebook.

Virtual

• Can’t join us in person? Then walk anywhere you wish; in your home, in your backyard, on the treadmill or in a park near you. Then join us via zoom for our program which kicks off at 11:00 AM.

Date:
Saturday, October 1, 2022

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A 28-year-old sickle cell anaemia survivor Musonda Mwilwa has fulfilled her dream of becoming a medical doctor.

Mwilwa said she had always wished to be a medical doctor even after she was diagnosed with sickle cell anaemia when she was nine months old, Times of Zambia reports.

Mwilwa was among the 31 doctors that were recently inducted by Zambia Medical Association at Lusaka Apex Medical University.

Please join the Sickle Cell Disease Association of America as we advocate for those affected by sickle cell disease. On Advocacy Day, we focus on key legislative issues that are important to individuals living with SCD and their families, including promoting stable funding for research, better healthcare access, expanded programs, and increased education and awareness for the SCD community and programs throughout our nation.

The Advocacy Day is postponed until Spring 2021 due to the coronavirus.

Please stay tuned for further updates.

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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When: September 16, 2023
Where: Rash Field, Baltimore, MD
How to participate: Register for the event, customize your personal fundraising page, and share it widely with friends and family to help us reach our goal. Then join us on September 16th for an incredible in-person event!

When you participate in the Walk with the Stars, you are helping to build a future where there is a universal cure for sickle cell. Walk with the Stars is the perfect opportunity to encourage friends, loved ones and co-workers to make a life-impacting change for all those affected by sickle cell disease and sickle cell trait. United with every walker and runner, together we can raise the necessary funds which will get us that much closer to finding a universal cure!

Rally your friends and family, register to join us on September 16th, and help us fundraise and make a difference in the lives of those affected by sickle cell!

Meet Helen Obando, a shy 16-year-old who likes to dance when her body isn’t ravaged by the debilitating symptoms of sickle cell disease. The genetic blood disorder can cause strokes, organ damage and intense pain that can feel like glass running through her veins.

After a lifetime of pain and potential permanent damage to her body, Helen had the opportunity to receive a breakthrough experimental treatment at Boston Children’s Hospital that would make her the youngest person in the U.S. to have her DNA reset in an attempt to cure her sickle cell disease.

The outcome of her gene therapy could help determine how an estimated 100,000 people in the U.S. and millions more around the world are treated.

Elijah Powell was determined to live his life fully, to achieve his goals in spite of his sickle cell diagnosis. He was known for declaring: “I have sickle cell, but sickle cell doesn’t have me.”

On Jan. 14, early in the morning, Powell died due to complications from his sickle cell disease. He turned 25 two days before his death.

He described the pain crisis as “beating you with a bat, or setting you on fire, and you can’t do anything,” and said it was hard having sickle cell because of how the condition depleted his body.

The American Society of Hematology (ASH) today released the most comprehensive set of recommendations to date aimed at establishing uniformity and global standards for clinical trial endpoints used to evaluate new therapies for sickle cell disease (SCD). The new recommendations – published in two companion papers in the current issue of Blood Advances – are the result of seven expert and patient led panels convened by ASH and the U.S. Food and Drug Administration (FDA) to improve the design of clinical trials for new SCD therapies, including promoting broader use of patient reported outcomes and biomarkers as clinical endpoints.

Sickle cell disease is the most common inherited red blood cell disorder in the United States, and it affects millions of people worldwide. In people living with SCD, the red blood cells, which are normally round, become crescent or sickle-shaped which contributes to the vaso-occlusive crises these patients experience.

Date: April 14-15, 2021

Place: Online/Virtual

Program Overview: This is a one-day conference designed to provide information on treating the whole person with sickle cell disease. Sickle cell experts will provide practical tools using case studies and interactive exercises. Sessions will include pain management and mental health tools; transition skills; and “out of the box” techniques such as virtual reality, and drama therapy. Practical sickle cell resources for nurses, advanced practice practitioners (APPs), and other healthcare professionals will be provided. New sickle cell disease treatment options and unconscious bias in the workplace will be topics of discussion as well as an innovative sickle cell disease APP residency program and a unique online sickle cell nursing curriculum. People with sickle cell disease will be an integral part of the conference and will provide input on "a day in the life".

Target Audience: This conference is open to the public; it is designed for people with sickle cell disease, their caregivers, healthcare providers, sickle cell advocates, and people who want to learn about sickle cell disease.

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Learning Objectives:

After completing this course, you should be able to:

• Discuss new therapies for sickle cell disease
• Understand unconscious bias in treating people with sickle cell disease
• Discuss innovative techniques for transition readiness

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