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Summertime and the Living Is...

Summertime and the living is busy! The summer months have been some of the most packed months for the Sick Cells team. From our annual Wiggin' Out for Sickle Cell fundraiser to World Sickle Cell Day, we're excited to host more events, meet more community members and continue raising awareness across the country.

This month we'll spotlight a warrior from Memphis, chat about our time at the BIO Conference and share some exciting news related to our hard work in 2018. We'll have some News You Can Use, but first...
 

A Minute With Marqus

June felt like 30 days of accomplishments and positivity for Marqus. He stayed busy traveling, working on new projects and meeting new members of the SCD community. This month, Marqus recaps a positive moment he had with a fellow sickle cell warrior in Cincinnati. 
Marqus and fellow sickle cell warrior, Cashawna in Cincinnati for the Sickle Cell aWAREness Foundation fundraiser

Professional football player and philanthropist, Spencer Ware founded the Sickle Cell aWAREness Foundation to raise awareness and support those living with sickle cell disease. On May 31, Sick Cells was honored to be invited by Spencer Ware and his team to speak to a community of warriors and their families in Ohio.

Spencer, Cashawna, Marqus and Ashley in Cincinnati for the Sickle Cell aWAREness Foundation fundraiser
It’s always good to meet and talk with those who are affected by sickle cell disease. We met Spencer’s mother, Cashawna Franklin, who inspired her son to use his influential platform as an NFL player to educate the world about sickle cell and encourage those living with the disease to keep pushing through. When I met Ms. Franklin, we immediately could relate to things like port-a-caths, our ways to cope with pain, and what it means to be called a warrior. We exchanged tips for travel. For example, prior to driving to Cinnicanti, I visited my doctors the entire week. We prepared by:
 
  • Accessing my port-a-cath just in case I got sick away from home 

  • Receiving IV fluids two days before I traveled

  • Getting my travel letter, so if I got sick out of state, I would have information about illness and how to contact my doctor

  • Checking my blood work to make sure my hgb and other counts were stable (this was to make sure I wouldn’t leave and experience some sort of infection that was brewing)


I brought with me a liter of fluid just in case my pain was high throughout the night. Be it a caregiver, parent/guardian, or one living with sickle cell, we all share a bond and can learn a lot at an event or conference. We are our own best advocates. With June coming to a close, I look forward to seeing what’s next. I’m always excited to see the sickle cell disease community progress. It helps balance all the good in our lives. It’s important that we build happy fun memories.

Thank You for Your Donations

You can support the mission to elevate the voices of the sickle cell community.
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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.
Progress in Sickle Cell Disease Treatment and Policy Implications
On June 18, 2019, Senators Tim Scott and Cory Booker hosted a congressional briefing on the state of sickle cell disease research and the need for increased funding. The briefing was hosted in partnership with Pediatric Hospital Sickle Cell Disease Collaborative, The American Society of Hematology, the American Society of Gene & Cell Therapy, the Sickle Cell Disease Association of America, and American Society for Transplantation and Cellular Therapy.


Newborn Screening Act
The EveryLife Foundation for Rare Diseases is asking advocates to contact their Members of Congress in support of the Newborn Screening Saves Lives Reauthorization Act. To contact your Representatives to cosponsor H.R. 2507, click here.
A picture from Sick Cells' Bravehearts therapeutic riding event was featured at Tim Scott and Cory Booker's congressional briefing in June

Congratulations Team Sick Cells

Each year, Global Genes asks the community to nominate those deserving of recognition for their extraordinary efforts in rare disease. The entire Sick Cells team was chosen as a nominee for the 2019 Rare Champion of Hope award for their work in policy and storytelling.
Team Sick Cells members and volunteers in DC in February 2019

10th Annual World Sickle Cell Day

Every June 19th, our community celebrates World Sickle Cell Awareness Day. This year, the Sick Cells team wore red to raise awareness for all of those living with and impacted by sickle cell. While World Sickle Cell Day may be once a year, we'll continue to fulfill our mission and #ShineTheLightOnSickleCell each day.
Sick Cells team members Maya, Kelly and Selena wore red for sickle cell on June 19

Spotlight Interview: Juveiane

Sick Cells met Juveiane in Memphis in September 2018. This month, in honor of World Sickle Cell Day, we want to highlight some powerful advice he shared about managing sickle cell day-to-day. While those living with SCD are often told to "push through," Juveiane reminds us why it's important to always listen to your body. 
 

Sick Cells: How do you manage sickle cell in your everyday life?

Juveiane: Sometimes I don't. Sometimes I just keep pushing through it. I keep fighting even though I shouldn't be, such as now. Just try to make it work the way I'm making it work.

Sick Cells: What is something you want to tell people who live with sickle cell disease?

Juveiane: Keep pushing, keep fighting. Don't allow sickle cell to dictate your life but listen to your body as well. Listen to your body and follow it. 

BIO International Convention

From June 3-6, the Biotechnology Innovation Organization (BIO) hosted its annual convention. More than 16,000 attendees from around the globe gathered for partnering, education, networking and to learn about innovative industry thought leaders.

Sick Cells and the SCDAA attended as nonprofit exhibitors. Sick Cells met with multiple nonprofits, like the National Alliance for Caregiving, to discuss resources for the sickle cell disease community.

As drug development continues to expand in the sickle cell disease space, meetings like BIO allow the community to learn what treatments and therapies are in the pipeline. 
https://convention.bio.org/2019/

Foundation for Sickle Cell Disease Research (FSCDR)

June 7-9, FSCDR hosted its annual sickle cell disease research and educational symposium. Historically, the conference is geared towards providers and industry. This year, an overwhelming amount of patient advocates attended to learn about drugs in the pipeline for SCD, research, and panel discussions that included patient and family experiences with SCD: https://fscdr.org/the-symposium/

Upcoming 2019 Conferences

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.

Rare Across America. July 29-September 8. Rare Disease Legislative Advocates (RDLA) staff organizes meetings for rare disease advocates with their Members of Congress and/or the Member’s staff. The meetings take place in the Member’s district office during the month of August, while Congress is in recess from July 29th to September 8th, 2019. The RDLA team also helps to prepare advocates for their meetings, providing legislative resource materials and hosting pre-meeting training webinars.

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. 

We're Wiggin' Out on July 20!

On July 20, Sick Cells is hosting its third annual Wiggin' Out for Sickle Cell fundraiser at the Dirty Goose in Washington, DC! It will be a day packed with fashion shows, makeup tutorials, raffles and more!

Save the date and start looking for the best wigs to rock for the cause! 
Sick Cells' 2017 and 2018 Wiggin' Out events

News You Can Use

CDC Sickle Cell Disease NOFO: Through this Notice of Funding Opportunity (NOFO), CDC plans to fund up to seven recipients for a one-year period of performance to participate in a rigorous course of activities to build capacity for a state-wide SCD surveillance system. This NOFO will improve and expand the current sickle cell data collection (SCDC) efforts by building the capacity of additional states to implement the program.

Submit Your Essay to WIN a Scholarship to PAINWeek: PAINWeek will award 10 scholarships that cover the cost of registration, and one grand prize winner will receive 5 nights of hotel accommodations at The Cosmopolitan of Las Vegas in addition to complimentary conference registration. The deadline to submit is June 30.

Out-of-pockets costs: Medicine's biggest problem and government and industry's biggest opportunity: Last month, IQVIA published a new report that noted nearly 20 percent of Medicare patients pay more than $500 out-of-pocket per year for prescription drugs, compared to only 8 percent of patients in commercial plans.
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