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Summer is Coming...

From our #FacesOfSCD photo series to the American Red Cross Heroes breakfast, Sick Cells made quite a few appearances in your inboxes and on your social media timelines this month. Needless to say, the Sick Cells team is staying busy and gearing up for an incredible summer 2019.

This month, we'll focus on policy updates, put some important conferences on your radar and recap therapeutic riding day. We'll have some News You Can Use, but first...
 

A Minute With Marqus

This past month is one Marqus described as one he’ll never forget. In his 35 years, he deemed the Red Cross Heroes breakfast one of the proudest moments of his life.
Marqus and Ashley Valentine's 2019 Red Cross Heroes video

Being honored at the Red Cross Heroes breakfast in May 2019 will forever be one of my proudest moments. I was so honored to be deemed a “hero” in the Chicagoland area alongside my sister, Ashley. From the beautiful venue to the people in attendance, everything was incredible. Each hero was introduced in a video where they had an opportunity to share their story. You can take a look at ours above.

While we were able to meet the other heroes at a reception in early April, it was even more powerful to see their videos and hear them talk about their personal stories live. I was just so overwhelmingly grateful to be honored alongside these incredible individuals.

Marqus giving his thank you speech at the 2019 Red Cross Heroes Breakfast on May 1 

When Sick Cells was created, we had a goal to tell the world about sickle cell disease. Our organization was built on a hope for a brighter tomorrow for those living with and impacted by SCD. While we are motivated by the voices of the community to continue toward our mission each day, being recognized really puts fire under our feet to do, inspire and teach more.

We’re making a difference and it’s being heard. I’m so honored and humbled by this. And that’s why I will never forget this day. Take it from me, all it takes to change the world is a vision of a brighter tomorrow. If you truly believe in it, who can stop you? This award belongs to everyone at Sick Cells and those living with SCD and other rare diseases.

Red Cross Heroes Breakfast

At the beginning of May, Sick Cells sent out a special newsletter on the Red Cross Heroes breakfast. You can read a full recap of the event, view more pictures and learn more about Sick Cells' mission here
The 2019 American Red Cross Heroes

Thank You for Your Donations

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Each month, Sick Cells highlights policy updates impacting the sickle cell and larger rare disease community. Why? It is Sick Cells' mission to elevate the voices of the sickle cell disease (SCD) community and their stories of resilience. In highlighting the grave disparities this community faces, we hope to influence decision-makers and propel change.
Rare Disease Congressional Caucus Update
 
In February 2019, sickle cell advocates joined hundreds of other advocates at Rare Disease Week on Capitol Hill. During the week, advocates met with their elected officials to discuss legislation impacting the rare disease community. 

As a result, the Rare Disease Caucus has six new members bringing the total membership of the caucus to 118 Representatives and 17 Senators. Thank you to everyone who cheered us on and supported all of the advocates.

The list of members of the caucus can be found at 
rareadvocates.org/rarecaucus. You can still ask your Members of Congress to join the Rare Disease Congressional Caucus here.

Regional Updates
  • On May 13, NORD and its Illinois State Ambassador, Maria Belliefeuille, sent a letter to the Insurance Committee in support of HB 2174, legislation to alleviate patient out-of-pocket drug costs.
  • On April 24, NORD joined a coalition one-pager regarding step therapy reform legislation in Pennsylvania.

Take Action: New Born Screening Saves Lives Act

In May, Representatives Lucille Roybal-Allard (CA) and Mike Simpson (ID) introduced the Newborn Screening Saves Lives Reauthorization Act. This legislation’s last reauthorization will expire on September 30, 2019.

The EveryLife Foundation for Rare Diseases is asking advocates to contact their Members of Congress in support of the Newborn Screening Saves Lives Act. To contact your Members on the Newborn Screening Saves Lives Reauthorization Act, click here.

Therapeutic Riding Day

On May 11, the Sickle Cell Disease Association of Illinois (SCDAI) and Sick Cells teamed up with BraveHearts for their first-ever sickle cell disease therapeutic riding day. Reports show that there are many benefits of therapeutic riding for people with cognitive and physical disabilities. 
Therapeutic Riding Day participants on May 11
Terrance and Marqus pose for a photo at BraveHeart on May 11
Terrance, a sickle cell advocate from Chicago, said this was his first time riding horses. He's never been to a barn before and felt that the experience was good for his spirit.

Faces of SCD Photo Series

Our #FacesOfSCD photo series continues this month with stories from Memphis, Tennessee. Follow us on Instagram and Facebook to follow along.

Upcoming 2019 Conferences

Academy Health - 2019 Annual Research Meeting. June 2-4. Join an audience from around the world working to improve health and healthcare at the 2019 Annual Research Meeting (ARM) in Washington, D.C.

The Foundation for Sickle Cell Disease Research (FSCDR) - 13th Annual Sickle Cell Disease Research and Educational Symposium. June 7-9. Watch last year's recap here

Mental Health America. June 13-15. Each year, MHA's Annual Conference brings together affiliates, consumers, providers, family members and advocates from across the country to talk about important and emerging mental health issues.

Senator Tim Scott is Hosting a Briefing On: Progress in Sickle Cell Disease Treatment and Policy Implications. June 18. 2:30 – 3:30 p.m. Dirksen Senate Office Building, Room G50.


SCD Clinical Trials Network Workshop. June 22. During the workshop, members of the Sickle Cell Disease (SCD) community will be invited to engage in creative and collaborative activities centered around raising awareness, educating the public, and improving clinical trials for SCD! 

Rare Action Network Patient Advocacy & Orphan Drug Workshop. July 19. An opportunity to learn about rare disease patient advocacy and connect with NORD about current legislative actions. In addition, this workshop will feature an opportunity to speak directly with members of Congress and their staff from the state about the Orphan Drug Act.

EveryLife Foundation for Rare Diseases - 11th Annual Scientific Workshop. September 5. This year's topic will be, "Science of Small Trials in the Age of Biological Plausibility."

Annual Sickle Cell Disease Therapeutics Conference. September 10. A forum to discuss the latest advancements and future trends for treating patients with sickle cell disease.

RARE Patient Advocacy Summit. September 18-20. The RARE Patient Advocacy Summit is an opportunity to forge meaningful connections with other rare advocates and take home actionable strategies and tools to accelerate change. Save the data for the Foundation Alliance In-Person Meeting following the Summit on September 21. 

Rare Disease Diagnostics Summit. September 24-25. The Summit is the first of its kind, focusing solely on the diagnostic component of genetic rare diseases. It will bring together 150+ leaders in diagnostics, medical and scientific affairs, and patient advocacy, as we strive to reduce the diagnostic burden felt by patients and their families.
Do you have any walks or talks you'd like Sick Cells to include in our monthly newsletter? Please send details to avassall@sickcells.org. Please note: Sick Cells sends our newsletter out the last weekday of each month. 

News You Can Use

Tune In: The Sickle Cycle Podcast is a monthly conversation about all things related to Sickle Cell Disease. Explore the complexities of this inherited blood disorder with guests from the sickle cell community. Learn about resources and treatments on ways to improve the quality of life for those impacted by this global disease. Listen on iTunes or Soundcloud.

St. Louis teen won't let what some call a disadvantage slow him down: Brandon Gardner was born three months early and diagnosed with a mild form of cerebral palsy and sickle cell disease, which affects red blood cells.

‘Adulting’ with sickle cell anemia: Moving from childhood to adolescence into adulthood brings its own milestones, freedoms and responsibilities of growing up. For a young person with a chronic or an inherited health condition, such as sickle cell anemia, the transition can be overwhelming going from pediatric care to adult health care. 

Mother Of Shooting Victim, Sickle Cell Survivor Honored By Red Cross For Non-Profit Work: You probably don’t know their names; they’re not famous, but they are heroes.
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