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Happy summer! It’s our favorite season at Sick Cells because it's when our team goes out to meet new and familiar faces. This month, we headed to Chicago for the 44th Annual Walk-Jog-Bike-A-Thon hosted by the Sickle Cell Disease Association of Illinois (SCDAI). We’ll relaunch our #FacesOfSCD storytelling series in August.

This month, we're also gearing up for our second annual Wiggin' Out for Sickle Cell Cell fundraiser in D.C. We'll recap World Sickle Cell Day, provide updates on SCD policy, and share a few walks and conferences you should have on your radar. We'll also provide some News You Can Use, but first...

A Minute With Marqus

These past couple of weeks have been filled with a lot of preparation for Marqus’ knee and hip replacement surgeries. It’s been stressful for the Valentines, but Marqus remains positive. He knows this journey will result in less pain and more mobility. It takes a village to make things run smoothly, but nothing keeps a sickle cell warrior down.
Marqus on his way to a doctor's appointment 
Aside from my family planning for the surgery, I personally had to make sure I was prepared from a medical standpoint. For a week, I spent almost every day in the hospital visiting doctors and having tests to make sure I am healthy enough for the surgery. Cardiologists, hematologists, and ENT specialists are a few of the doctors I had to get clearance from.
Marqus at one of his many check ups in preparation for his two surgeries 

Now that I have been granted clearance to have the surgeries, it is time that I mentally prepare. My knee surgery will be on June 29. I am not as nervous for this surgery because it is not as major as the hip replacement. The knee surgery will last about 15 minutes. It is a quick one, but it is a big stepping stone in the direction of me having less pain and being able to walk much, much better.

Family time with Ashley and Marqus Valentine

The hip replacement is a little more nerve-wracking, but the benefits from it will be worth it. I know many other sickle cell disease patients that have had the replacement and experienced a lot of pain, but I am still excited to have this operation. I am excited to have some relief from the pain I experience. I know it will be a long journey, but I can definitely see the light at the end of the tunnel.

Policy Corner: S.2465

For the past few months, we've been following S.2465, the Sickle Cell Disease Research, Surveillance, Prevention, and Treatment Act of 2018. After several months, now is the time for our community to act. The HELP committee is considering S.2465 for markup next month, so it is important to have advocates reach out to Senators, especially those on HELP, to cosponsor or support.

Below, we've included details on the HELP Committee and Senators you can immediately contact to help support. 
S.2465 and HR2410 are now in the hands of the Senate HELP Committee. The HELP committee stands for the Health, Education, Labor & Pensions and began in 1869. The HELP committee is currently ran by 22 Senators, 12 Republican and 10 Democrats, who work together and have a large jurisdiction over the country's health care, employment, retirement and education policies.

While in the Committee, the bills will undergo any necessary changes (i.e., additional information from non-committee experts, comments from relevant executive agencies) and then sent back to the full Senate. Now is the time for the sickle cell community to actively advocate for the bills.

If you are from any of the states in the HELP committee, make sure you reach out to your Senators and offer to help them understand sickle cell disease and ask them to co-sponsor S.2465 and HR2410. We listed their names and hyperlinked them to their twitter accounts. Be sure to send them a tweet about the bills!
Michael B. Enzi (WY) 
Richard Burr (NC) 
Susan Collins (ME) 
Bill Cassidy, M.D. (LA)
Todd Young (IN)
Orrin Hatch (UT)
Pat Roberts (KS)
Tim Scott (SC)
Lisa Murkowski (AK)
Lamar Alexander (TN)
Bernie Sanders (VT)
Michael F. Bennet (CO)
Tammy Baldwin (WI)
Christopher S. Murphy (CT)
Elizabeth Warren (MA)
Tim Kaine (VA)
Maggie  Hassan (NH)
Doug Jones (AL)
Patty Murray (WA)

World Sickle Cell Day

World Sickle Cell Day was June 19, and we celebrated with a familiar face and a Sick Cells Takeover Tuesday! Chantelle Rodgers, who was also featured on Takeover Tuesday last year, took over our Instagram and shared her daily journey with sickle cell all the way from Rotterdam Netherlands. From her diet to a fun concert (Beyoncé!), Chantelle gave us a full glimpse of her day.

Review her story on our
Instagram page. Also, check out the IXL - Sickle Cell Awareness Facebook page, an international nonprofit organization Chantelle is an active and passionate member of. 
Chantelle Rodgers took over Sick Cells' Instagram on World Sickle Cell Day, June 19

Wiggin' Out for Sickle Cell

Our second annual Wiggin' Out for Sickle Cell is quickly approaching! This year, we're gathering at the Dirty Goose in Washington D.C. on July 14 for a fun-filled evening of raffles, fashion shows, drinks and good company.

We're bringing back our favorite fashion designer, Tristan Lee, so make sure to
read his story before the big day. If you're going to be in the DC-area, please share our flyer with your networks. Stay tuned for more updates in July!

Just announced! The following businesses have generously donated the following raffle prizes to this year's Wiggin' Out: 
Share this official Wiggin' Out flyer with your friends and family!

Upcoming Walks

Sick Cells is continuing its #FacesOfSCD storytelling photo series this summer. Sick Cells will attend the 5th Annual Walk With the Stars & Move-a-thon on August 18 in Baltimore. If you're going to be in or around Baltimore, MD, register your team here.

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. 
Sick Cells is also excited to announce we will be returning to Central Park in NYC to join the 20th Annual Walk for Sickle Cell Education and Awareness. Register here

Upcoming Conferences

Registration for In-District Lobby Days Now Open,  Rare Disease Legislative Advocates is hosting In-District Lobby Days to facilitate meetings for rare disease advocates across the country with members of Congress in their local offices during the 2018 summer in-district work period (July 31, 2018, through Sept. 4, 2018). Deadline is July 4.

Annual Sickle Cell Disease Clinical Research Meetings, is a three day meeting that provides a yearly forum for investigators, practitioners, and interested health care providers to discuss the process of ongoing clinical trials, hear presentations about new developments in scientific and clinical aspects of SCD, and interact with other investigators and NHLBI Program Staff in an informal setting. August 13 to August 15.

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

Public Meeting on Patient-Focused Drug Development for Chronic Pain, Silver Spring, Maryland: On July 9, 2018, FDA is hosting a public meeting on Patient-Focused Drug Development for Chronic Pain. FDA is interested in hearing patients’ perspectives on chronic pain, views on treatment approaches, and challenges or barriers to accessing treatments for chronic pain.

Sickle Cell in Focus (SCiF) Conference, SCiF is a two-day, intensive, educational update on sickle cell disease. This year’s conference will focus on management of the older adult patients, curative therapies, systems medicine, and will also include 2 debates on issues for which there are no clear answers.

Rare Diseases and Orphan Products Breakthrough Summit, Washington, DC: From October 15-16, the NORD Rare Summit provides a unique opportunity to hear from the experts and join the conversation on issues of unprecedented importance. Those who attend will: 
  • Meet and collaborate with experts from FDA, NIH, and the orphan product industry
  • Be part of the conversation as we work together to drive improvement and progress
  • Learn about groundbreaking innovation and emerging research
2018 BIO Patient & Health Advocacy Summit, Washington, DC: From October 25-26, this event 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. Learn from and network with key stakeholders in the healthcare ecosystem.

Artia CrossroadsThe conference will explore crucial Medicaid issues from all facets relating to pharmaceuticals, patient access, and patient impact. Crossroads symbolizes the intent: to bring together separate sectors to find common ground and innovative solutions for issues related to Medicaid.

News You Can Use

FDA puts Vertex, CRISPR sickle cell trial on hold:The FDA has placed a clinical hold on Vertex and CRISPR Therapeutics’ sickle cell disease candidate. Shares in CRISPR fell 15% as investors digested the delay to the start of the gene-editing startup’s first U.S. clinical trial.

1,000 babies born with sickle cell disease in Africa daily – Report: A report from the American Society of Hematology (ASH) indicates that at least 1,000 children are born in Africa with sickle cell disease (SCD) every day.

Global Blood Therapeutics - What The Recent HOPE-KIDS 1 Data Foretells: 43% of patients on voxelotor achieved an improvement in their hemoglobin levels, thus indicating clinical efficacy. Symptomatic improvement observed in 61% patients, as assessed by the total symptom scores.
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