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Summer's Still Hot!

Sick Cells isn't saying goodbye to summer quite yet because we still have stories to capture in New York City and down south in Memphis! We're packing our bags, grabbing our cameras and can't wait to meet some new faces. 

This month we'll highlight our storytelling series and give some updates on policy. We also have a special membership announcement and some News You Can Use, but first...

A Minute With Marqus

Hip hip hooray! After a year in the making, Marqus had his total hip replacement on August 6. He shares his experience with the healing process, in-patient rehab, and looks back on how he lived with excruciating hip pain every day. 
Marqus stands next to his dad to show how tall he is after the hip surgery. In the words of his dad, "I didn't realize Marqus shrunk during his bad hip years. He's as tall as me again. I almost cried." 
After all the hip replacement doctors appointments, weekend education classes, in-home nursing visits, and mental prep, on the eve of my hip replacement surgery, we all set our phone alarms for 4:00 a.m. I was scheduled to check-in for surgery at 5:00 a.m. Well...everyone in my family slept through their alarms. I awoke at 5:00 a.m. to my frantic mother screaming, "EVERYONE GET UP! WE'RE LATE FOR HIS SURGERY!"

While my mom threw suitcases into the car, my sister, Ashley, swiftly got me dressed. My dad started the car and basically carried me down the steps because I couldn't move fast. In the car, the hospital called to ask where we were, elevating our stress levels to a max. We explained that we were almost there and begged them not to cancel the most important surgery of my adult years. 

With Ashley dictating directions and my mom clutching the steering wheel, we made it to the hospital, that's normally 20 minutes away, in 12 minutes flat. We arrived at 5:35 a.m. with the operation team welcoming me with open arms. 
Marqus heading into surgery at 6:45 a.m. on August 6
The surgery took three hours. After I was moved to recovery, my family told me that I laid flat for the first time in two years. It was odd for me, after living with teeth grinding pain and maxing out on my pain meds for two years, I could feel my entire body again. Unfortunately, that night I had a sickle crisis and needed a unit of blood, but even during the crisis, it was all sickle pain, not hip pain. I could focus on one type of pain, and it took less medicine to break the crisis.

Don't get me wrong, the crisis was terrible. It was the first time my night nurse had ever seen a sickle cell crisis. She had a tough time getting a hold of the anesthesiologist to prescribe pain meds but apart from him, she rallied everyone else on her team to get me out of the pain. 
Ten hours after Marqus' surgery, the physical therapy and occupational therapy team began his rehab. Marqus' leg rests evenly on the ground for the first time in two years, while the therapy team reteach him how to put on his shoes.  
I spent seven days in the hospital because of my sickle cell disease, but worked with the rehab team every day. The rehab team decided that I should continue my rehab at an intensive in-patient rehab center. I had a whole slew of normal life movements and skills to relearn. We practiced things like getting in and out of cars, walking on steps, learning how to lay down properly, and focusing on how to use my muscles to walk in a straight line. 
Three weeks after Marqus' hip replacement, he's regained his mobility and can walk around his house without assistance.  
After two years of living every moment of my life riddled with pain, all I want to do now is play George Michael's song, "Freedom" on repeat. I'm finally freed from my past hip life and mobile again. I'm taking less pain medications and have a clear head to actually think and engage with my friends, family, and peers.

I know it's a long road of recovery and that I still run the risk of needing another hip replacement in my future. Nevertheless, as it stands right now, I'm back to my normal sickle cell aches and pains...something I'm totally used to at my age. 

Sick Cells Joins NORD

Sick Cells joins a growing number of patient organizations in the National Organization for Rare Disorders (NORD) membership community. Sick Cells is the first and only sickle cell disease organization of the 380 members groups. We are honored to officially join this community and will continue to work closely with NORD and the SCD networks to advocate for those with rare disorders.
Sick Cells officially becomes a member of NORD

Congratulations Ashley!

The EveryLife Foundation nominated Sick Cells' Co-founder and President, Ashley, as a finalist for their RareVoice Awards.
The EveryLife Foundation is a rare disease nonprofit that focuses on accelerating biotech innovation for rare disease treatments through science-driven public policy. In August, they announced that Ashley was nominated for a RareVoice award for her work activating the sickle cell community to attend Rare Disease Week in February.

Ashley, with the help of fellow advocate Terri Booker, recruited 44 SCD advocates to travel to Washington, DC. In addition to having the most SCD advocates ever show up for Rare Disease Week, the EveryLife Foundation also had over 90 SCD advocates apply for their travel stipend, making this the largest amount of advocates to ever engage from one disease population.

Among the nominees is also Senator Cory Booker's health policy staffer, Kim Miller-Tolbert for her work on SCD bills H.R.2410 and S.2465. The RareVoice Awards takes place on September 12 at Arena Stage in Washington, DC. You can register for the event 
here.  
Co-founders of Sick Cells, Ashley and Marqus Valentine, at Rare Disease Day in Illinois

#FacesOfSCD - Back At It! 

This August, Sick Cells kicked off our storytelling series. We'll continue sharing stories from the individuals we met in Chicago throughout September and October. View Sick Cells' entire #FacesOfSCD storytelling gallery here.

Sick Cells has been devoted to sharing the diverse stories of those in the sickle cell community for over two years. Our mission is to continue elevating these unique stories with the goal of raising awareness and understanding for SCD.

Has there been a particular #FacesOfSCD story that's stuck with you? Have you been impacted by someone's story? We'd love to know. Be on the lookout for stories from NYC, Cleveland and Memphis in fall 2018. 

See you in NYC and Memphis!

We're closing our out summer with interviews and photographs of SCD advocates and their families. If you're in NYC or Memphis, please stop by and meet us.
Sick Cells volunteer, Depreece, interviews Dennis in Chicago earlier this summer 
On September 15, we'll be returning to Central Park in NYC to join the 20th Annual Walk for Sickle Cell Education and Awareness hosted by the Sickle Cell and Thalassmia Patient Network (SCTPN). Register here. We'll be joined by our friends from Vitacoco to keep our participants hydrated. 

On September 29, we'll be in Memphis for the 
Mark Walden Memorial Sickle Cell 5K Run/Walk. Register here. We're excited to gather interviews in a new region of the US, so please let us know if you'll be attending!
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. 
The Shorter family at the Chicago sickle cell walk

Upcoming Conferences

Annual Sickle Cell Disease Therapeutics Conference (SCDTC), September 13, A forum to discuss the latest advancements and future trends for treating patients with sickle cell disease.

Registration for 2018 Rare Disease Scientific Workshop Now Open, September 13, The Foundation will convene its tenth annual Rare Disease Scientific Workshop to conceptualize an FDA Rare Disease Center of Excellence in Washington, DC. The conference is free to attend, but participants must register in advance.

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.

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. It is an opportunity to interact on the latest advances in clinical care, transition services and emerging new therapies including updates for curative treatment options.

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 of robust programming to discuss timely policy issues and share best practices.

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 to share ideas for future research opportunities. 

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. 

Big News from Illinois! 

It’s official. House Bill 4146 is the law in Illinois! Sick Cells worked with the IL Fair Care Coalition, led by the U.S. Pain Foundation, to move this bill through IL Congress. Sick Cells is grateful for the passing of this bill and recognize how important this is for those living with chronic illnesses.

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.
Here, listed under 'Other Resources', are valuable resources to help contact your Senators.

News You Can Use

Olivia's Sickle Cell Community Awareness Party: Celebrate with Olivia in Matteson, Illinois! Join Olivia for dancing, food, fun, face painting and much much more.

Patient groups rattled by new Medicare power to negotiate lower drug pricesA new federal policy intended to drive down drug prices could have a negative effect on patients, particularly those with chronic conditions, according to health advocates.

What a Patient Should Know about Home Health Services: This video explores what home health agencies are and the benefits they provide to people with Medicare.
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