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So Long Sweet Summer...

Hello, Fall! Sick Cells spent its summer attending walks and meeting those living and impacted by sickle cell disease. We met so many motivated people and collected over 35 stories, but we're not done yet. Tomorrow, we'll be in Memphis, Tennessee. We can't wait to meet some new faces down south.

This month, we'll share a spotlight interview and some upcoming conferences you should attend. We have some News You Can Use, but first...

A Minute With Marqus


Marqus is back in the swing of things just in time for National Sickle Cell Awareness Month. This month, he discusses being crowned prom king, the town hall meeting and his TV debut on Fox 32 with Talana Hughes from the Sickle Cell Disease Association of Illinois (SCDAI).
(Left to right) Michelle, a mother of a child with SCD, Talana Hughes of SCDAI, and Marqus backstage on Fox 32. They discussed the importance of sickle cell awareness year round. 
The month of September has been a celebration for me. I started the month by going to prom, and it was amazing! I was hospitalized for my junior and senior proms in high school, so when the Chicago sickle cell nonprofits asked me to MC their Sickle Cell Awareness prom, I said, YES!

To make the sickle cell prom even better, my original date from high school joined me over a decade later for the special night. That night, I was crowned prom king. I even got the chance to put my new hip to the test on the dance floor.
Marqus with his prom date, Andrea, at the Chicagoland area sickle cell prom. 
Marqus and the prom queen with the planning committee. 
Every September, for the whole month, I try to talk about sickle cell disease. I use social media to share helpful information and tell personal stories from my journey. I also go out into the community and educate others on SCD. Thanks to SCDAI and Talana Hughes, I was able to be a panelist for a discussion on the emergency departments in the Chicagoland area and their treatment of SCD patients.
The SCDAI town hall meeting where Marqus was a panelist. 
Marqus and Talana Hughes on Fox 32 Chicago discussing sickle cell awareness. 
This year, I was able to go on Fox 32 Chicago and talk about what it's like to be a sickle cell warrior and an advocate for the sickle cell community, and how others can get involved.

This was a very proud moment for me. As a kid, I remember seeing a person on TV talk about their disease and I asked my mom and dad, “will somebody do that for sickle cell?" My dreams came true!

See You Soon, Memphis

On September 29, Sick Cells will be in Memphis for the Mark Walden Memorial Sickle Cell 5K Run/Walk. We're excited to gather interviews in a new region of the U.S., so please stop by and come see us if you're attending!

Memphis will conclude our summer walk interview portion. Stay tuned this winter for when the stories go live. The walks may be over, but we're just getting started.
Sickle cell advocates at the SCTPN New York City Sickle Cell Walk on September 15. Sick Cells Communications Specialist, Amanda Vassall, snaps a picture. 

Presidential Message on National Sickle Cell Disease Awareness Month

During National Sickle Cell Disease Awareness Month, we stand with those fighting sickle cell disease (SCD) and reaffirm our Nation’s commitment to finding a cure for this group of hereditary red blood cell disorders.

View the full message here.

Congratulations RDLA Finalist, Ashley

Sick Cells co-founder and president, Ashley Valentine, was a finalist for the EveryLife Foundation Abbey Awards. She did not win that evening, but she was the first sickle cell disease advocate to become a finalist. Finalist received a feature spot in the RDLA program, a video shown, and their name on various signs. 
 
Ashley was a finalist for her work activating the SCD community to attend Rare Disease Week in 2018. In total, 44 SCD advocates came to Washington D.C. to lobby for rare disease and sickle cell disease legislation. This is the highest number of SCD advocates to ever participate and the most advocates from one population to ever attend. 
Sick Cells co-founder, Ashley Valentine, was a finalist for the EveryLife Foundation Abbey Awards. 
If you missed Rare Disease Week this year, or would like to attend again, the travel stipends open October 8 and event registration opens at the end of December. Key dates for 2019 are the following:
  • Sunday, February 24: Documentary Screening
  • Monday, February 25: Legislative Conference
  • Tuesday, February 26: Lobby Day Breakfast & Lobby Day
  • Wednesday, February 27: Rare Disease Congressional Caucus Briefing & Rare Artist Reception
  • Thursday, Feb. 28: NIH Rare Disease Day
For more information about Rare Disease Week and how to get involved with the EveryLife Foundation, check out their website or email Lindsey Cundiff at Lcundiff@everylifefoundation.org. 
(Left to right) Kimberly Miller-Tolbert, Sen. Cory Booker's aid, poses with Ashley Valentine. Kimberly was a finalist for her work with the SCD population on S.2465 -- the Sickle Cell Disease Treatment Act. 

Spotlight Interview: Reginald & April

Reginald, April and their son, Reginald Jr. who is an infant with SCD, at the Sickle Cell Disease Association of Illinois' 44th Annual Walk/Jog/Bike-A-Thon in Chicago this past June

Sick Cells: What advice would you give to others living with sickle cell or sickle cell trait? 

Reggie: Study. Read. Learn. Talk. Ask. We're constantly told that by our team of hematologists whether they're asking us or not, but we ask a thousand questions whether repetitive questions or we ask them to definitely break them down into layman's terms, but we're just constantly asking questions.

We texted them concerns. We bounce ideas off of them whether it's natural or other medicines, whatever it is we come across. We're asking our team of hematologists and just ask. We read, we constantly YouTube information. You just gotta be informed and be aware.

April: Take notes [too].

Reggie: Yeah, take notes of everything that is going on. When he's in the hospital, as far as his temperature, vitals, times of this, times of that, just everything in which your child or your loved one experiences it needs to be notated. 'Cause that's the only way you can communicate back to the doctor.

April: And not only that, [but] every sickle cell patient is different. They go through different things. Some sickle cell patients may not experience other things but at least you know the history of your sickle cell patient, knowing the flare ups. You know the crisis that do occur most often.

You know around the time of year. We pay attention to the atmosphere we're putting him in and locations because some of that takes a toll on them. Until you can pay attention and know and jot things down, you will never be able to keep up with it to know what triggers it. Sometimes it triggers on its own, but sometimes different environments may trigger them to have different episodes as well, so you have to pay attention, and we write down everything.

Reginald Jr., an infant with SCD, smiling over his father's shoulder. 

Upcoming Conferences

2018 RARE Patient Advocacy Summit, October 3-4: Join Global Genes and nearly 800 attendees from across the globe to connect with rare advocates and thought leaders. 

Rare Diseases and Orphan Products Breakthrough Summit, October 15-16, the NORD Rare Summit in Washington DC provides a unique opportunity to hear from the experts and join the conversation on issues of unprecedented importance.

FDA-ASH Sickle Cell Disease (SCD) Clinical Endpoints Workshop, October 17-18, The SCD Clinical Endpoints Workshop is intended for a diverse group of clinicians and scientists responsible for the development of SCD therapies, interested parties involved in ongoing efforts on SCD research, and program officers from various federal agencies with an interest in SCD.

Sickle Cell in Focus (SCiF) Conference, October 22-23, SCiF is a two-day, intensive, educational update on sickle cell disease in Bethesda, MD.

Annual Sickle Cell Disease and Thalassaemia Conference (ASCAT) 2018, October 22-24, is an ideal opportunity to see the latest advances in diagnosis, treatment and emerging fields in haemoglobinopathies in London. 

2018 BIO Patient & Health Advocacy Summit, October 25-26, this event in Washington DC convenes patient advocacy organizations, academia, regulators, biotechnology industry, and other stakeholders for two days.

2018 PCORI Annual Meeting - From Evidence to Impact: Putting What Works into Action, October 31-November 2, as part of this year's theme, attendees will discuss important trends in patient-centered outcomes research and connect with colleagues in DC.  

Artia Crossroads, November 7-9, The conference is in Nashville and will explore crucial Medicaid issues from all facets relating to pharmaceuticals, patient access, and patient impact.

Chicago Sickle Cell Conference, November 9, patients will get updates on the state of sickle cell disease, local and regional healthcare initiatives, and hear from the IL patient population. 
Do you have any walks or talks you'd like Sick Cells to include in its monthly newsletter? Please send details to avassall@sickcells.org. Please note: Sick Cells sends its newsletter out the last weekday of each month. 

Policy Corner: HELP Committee Approves S.2465

We've received an important update on S.2465 from Stephanie Kaplan, Senior Manager of Government Relations and Public Health at American Society of Hematology.
On July 25, the Senate Health, Education, Labor, and Pensions (HELP) Committee unanimously approved legislation (S. 2465) sponsored by Senators Tim Scott (R-SC) and Cory Booker (D-NJ) to address issues related to sickle cell disease (SCD). 

This important legislation reauthorizes SCD prevention and treatment grants awarded by the Health Resources and Services Administration (HRSA) and authorizes the federal government to award data collection grants to states, academic institutions, and non-profit organizations with the goal of better understanding the prevalence and distribution of heritable blood disorders, including SCD, and the associated health outcomes and complications of these disorders.  

Although language in portions of the bill has been broadened to cover data collection and research for “heritable blood disorders, including sickle cell disease” (and not just “sickle cell disease” as originally drafted), Senators Scott and Booker, and a number of members of the HELP Committee, have noted that the intended focus of the programs authorized in the bill remains on SCD.


August Update: S.2465 was placed on the Senate Legislative Calendar under General Orders.The calendar, composed of several sections, identifies bills and resolutions awaiting Senate floor actions.

Act now! There's still plenty of work to do before the bill becomes law. We encourage everyone to call their Senators and make them aware of S.2465. 
Here, listed under 'Other Resources', are valuable resources to help contact your Senators.

News You Can Use

Sickle Cell Stories: The Office of Minority Health shares stories from those living with sickle cell. These

Fierce Photos Highlight Kids Battling Cancer And Sickle Cell Disease: September is Childhood Cancer Awareness Month and Sickle Cell Awareness Month.

Novartis and Jordin Sparks Team Up to Launch New Sickle Cell Storytelling Project: Novartis is teaming up with Grammy-nominated singer, film and Broadway star Jordin Sparks and the Sickle Cell Disease Association of America, Inc. (SCDAA) to launch Generation S, a national sickle cell disease (SCD) storytelling project that will help rewrite the SCD story for generations to come.
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