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Hello, sunshine! It's finally starting to feel like summer and that means our favorite time of the year is quickly approaching -- walk season!

Every summer, sickle cell organizations across the country host walk/run/jog/bike fundraisers that help support their efforts in the community. Sick Cells attends the events to collect stories from the community. 

Sick Cells will make its first stop at the Sickle Cell Disease Association of Illinois' Walk-Jog-Bike-A-Thon in Chicago on June 9. Let us know if we'll see you there!


This month we're also celebrating two years of our newsletter, announcing our new Donor & Participant Stewardship Program and giving you the official details for our second annual Wiggin' Out fundraiser. We'll have some News You Can Use, but first...

A Minute With Marqus

Marqus shares his thoughts and feelings on his upcoming hip replacement. The preparation for the surgery is steep and requires a lot of planning, but he's ready to walk again.
A recent X-ray of Marqus' hip
My leg ulcers are healed, which means I can move forward with the hip replacement. Because I’m a high-risk patient, boy do we have to complete a plethora of testing before anyone would think about working on me. I have to get cleared by the following specialist: 
  • Dentist 
  • Ear, nose, and throat 
  • Orthopedics   
  • Pulmonology 
  • Cardiology 
  • Hematology
  • Physical Therapy
  • Occupational Therapy 
  • Podiatry  
Despite the pain, Marqus remains hopeful as he mentally and physically prepares for surgery

To help me keep track of all these appointments and maintain my health, I set up telehealth to monitor my heart failure symptoms. I am also screening for a psychiatrist to help me through this process, and finally, I scheduled weekly massages to prepare my muscles and mind for the surgery.  

We have been talking about my hip for a year now. That’s because it took nearly 12 months for my leg ulcers to heal with a combination of monthly red blood cell exchanges, home nurses changing my bandages, bed rest, diet change, and sunlight. Unfortunately, while my leg ulcers were healing, my hip was deteriorating. It’s to the point now that I am immobile and my left leg (the side with the bad hip) is shorter than the right.

Marqus, showing off his retro Star Wars tee on his way out for a scheduled appointment

I’m nervous, because I hate going under for any type of surgery. I have heart failure, restrictive lung disease, and the rehab afterwards is a little intimidating. I mean, let’s be honest, even scary things happen to healthy people in the operating room. On the other hand, I’m super ready for this hip surgery to get done. I’m ready to walk again, interview my community at events, travel, and just have my mobility back. 

We’re planning to do the surgery in July or August. That gives my family time to request time off work to come home and for me to complete all my doctors appointments. If we could go to the OR today to fix my hip, we would; however, we have to plan it strategically to fit everyone’s schedules. That’s the thing about sickle cell disease - it takes a village to keep us warriors going.

Donor and Participant Stewardship Program

We’re proud to announce the roll out of the Donor and Participant Stewardship Program...also known as the DnP Program!
Team Sick Cells prepares gifts for past and future participants and donors
The goal of the DnP program is to thank our participants and donors! To the sickle cell community, sharing your story is often deeply personal. We understand that it takes bravery and courage to share the stories that need to be heard to create change. Sick Cells wants to show that we value your participation and provide an opportunity to stay engaged and continue to strengthen our community.
A special thank you to Deborah Tainter and Fran Valentine for helping prepare gifts for our participants
To Sick Cells' donors and volunteers, we want to ensure that you feel appreciated. We understand that out of all the nonprofits in the world, you chose to help us and your generosity doesn't go unnoticed. Your donations are what keep Sick Cells running and your time adds to the voice for change. For that, we are forever grateful.

Our Sick Cells team is in the process of contacting participants and donors to confirm mailing addresses. This cycle, Sick Cells partnered with Adagio Tea to mail everyone tiny tea jars with a little tea bag. We’ll start to mail gifts soon!

Happy (Belated) Birthday! 🎈

In April, Sick Cells officially celebrated two years of this newsletter! To celebrate, we're giving you an exclusive look at our very first newsletter. This newsletter is a testament of how far we've come.

Since then, our mailing list has doubled in size and we have featured Spotlight warrior stories in nearly every newsletter. We've met more members of the community, learned how we can better serve, and adjusted our programs accordingly. 

Also, take a minute to view our
2016 and 2017 Year in Review newsletters, which we send out every December. These will give you a quick look at what Sick Cells has been up to. 
Cheers to many more monthly updates! 

Wiggin' Out for Sickle Cell

Our second annual Wiggin' Out for Sickle Cell is quickly approaching! This year, we'll be 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 next month! 
Share this save the date with your friends and family

Congratulations Graduates! 

Congratulations to all the warriors who graduated or are graduating soon. Whether it's from kindergarten or college, we're so proud of you! A special shout out to Elijah Powell, one of Sick Cells' participants from last summer.

Elijah graduated from Morehouse College with a B.S. in Biology this May. He wrote on his Instagram that he was told he wouldn’t live past childhood, that school was too stressful for sickle cell patients, and that he couldn’t go to college. Despite all the noise, he pushed through and graduated.
Elijah earned his Bachelors of Science degree from Morehouse College in Atlanta, Georgia 
He wrote,

"I feel bad for him because he's always sick"
"Dang, he always has to go to the hospital"
"Morehouse!?! How is he going to attend Morehouse and he's always sick"
"He shouldn't go far from home to attend school since he's sickly"
"I regret to tell you your son has an enlarged heart, he probably won't live to see past his 12th birthday"
"You know sickle cell patients don't live long he'll probably die before his sees adulthood"

My ENTIRE LIFE people have tried to put limitations on me! Thankful to God that I was raised by two great women who always taught me to surpass those limitations! My faith in God is indescribable. My entire life I knew something was different about me. God is using me for something and as I continue to live it's all coming to manifestation-my purpose in Gods Kingdom. Getting this degree was the hardest thing I've ever done. I wanted to QUIT over and over and over and over again. I've cried myself to sleep from stress and being overwhelmed plenty of times, BUT GOD KEPT TELLING ME KEEP GOING SON! I'm so grateful to God for this. My 4 years and 1/2 semester at Morehouse has made me into a MAN that I couldn't ever dream of becoming. Thank you Mother Morehouse! Thank you to all my friends and classmates that always motivated and supported me. Thank-You to the doubters who became the fuel to ignite my hunger to succeed! Let me take this time to reintroduce myself. My name is ELIJAH M. Powell, B.S in Biology and I am a
M O R E H O U S E M A N !💪🏾

Upcoming Walks

Sick Cells is continuing its #FacesOfSCD storytelling photo series this summer. On June 9, we will attend the Sickle Cell Disease Association of Illinois' Walk-Jog-Bike-A-Thon. If you're going to be in or around Chicago, 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. 
The Sickle Cell Foundation of Minnesota is hosting its Walk Run Roll & Move for Sickle Cell Disease on June 16. Register here.
Going to be in Indianapolis this summer? Register for the Martin Center's 22nd Annual Sickle Cell 5K Walk/Run on June 23 here

Upcoming Conferences

Pre-approval Access Patient Advocacy Webinar: Register now for this important webinar. More information to be released soon. 

Foundation for Sickle Cell Disease 12th Annual Symposium, Washington, DC: The Foundation for Sickle Cell Disease Research (FSCDR) is committed to supporting innovative research in Sickle Cell Disease to help maximize quality of life and improve survival for the generations of people affected with this disease. This year's theme is improvement of therapeutic options for clinical care in sickle cell disease.

The 8th International Conference on Patient- and Family-Centered Care, Baltimore, Maryland: The conference is ​​being held June 11-13, 2018 at the Baltimore Marriott Waterfront. Those who work tirelessly to improve the safety and quality of health care will come together to share their expertise in fostering genuine partnerships among patients, families, health care professionals, researchers, and policy makers.

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.

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.

News You Can Use

NORD Issues Statement Regarding House Passage of the Right to Try (S.204): Read the statement the National Organization for Rare Disorders (NORD) on the passage of the Right to Try Act (S.204) to the House of Representatives.

St. Jude Hospital Given $1M Grant from Links Foundation to Advance 3 Sickle Cell Disease Programs: St. Jude has been involved in research for children with SCD since 1962, when the hospital first opened. It was also the first institution to cure a patient through the use of a bone marrow transplant.

Mom sacrifices everything to get son to St. Jude sickle cell treatment clinic: “I left everything. When I came here I just came with my boys. I had one box with their clothes in it,” Tiffany Denham said.
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