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We. Wigged. Out!

On July 20, Sick Cells hosted its 3rd annual Wiggin' Out for Sickle Cell fundraiser. The crowd was bigger and the laughs were harder this year. We can't thank our volunteers and attendees enough. Read more about this event a little further down the newsletter.

This month, we'll share policy updates, give a few tips on how to stay healthy this summer and highlight a member of the community. We'll have some News You Can Use, but first...

A Minute With Marqus

This month, Marqus celebrates another year around the sun and reflects on what the month of July means for him. 
Marqus, age 12 in this picture, celebrated a birthday while on a road trip with his family. 

I came into the world 36 years ago. From my birth to now I have had a mix of bad and good Julys. I’m so happy to add another category: epic. The entire month of July is like one long celebration.

All the festivals start and I am able to celebrate another year of life all month long.  My town has the 
Eyes to the Skies Festival. This event begins with a number of hot air balloons flying across the sky. As you can imagine, this sight is only heightened as fireworks light up in the night sky.

Marqus with his nephew Kaleb

 The last few Julys have not been easy. Last year, I was waiting for my hip replacement. I barely remember the month due to high amounts of pain medications and the constant pain of my bones rubbing together. The year prior, I had open leg ulcers, was forced to wear leg wraps and was bed bound due to pain and constant infection. 

Before those two years, I have been either stuck in the house or hospitalized due to health, but not this year! With my hip fixed, being able to walk around without pain was a nice change that allowed me to enjoy my birthday month. I was able to take my nephew everywhere, and we had so much fun.

After Kaleb left to go home, I was able to go see my friends. Many of these friends used to come see me when I was sick and hospitalized. I won’t forget one day when I was hospitalized during July, I left my room door open and Bryan, Tricia, Scooter, and their mom surprised me. It felt so good to see my friends after being stuck in the hospital during the summer. 
 

Marqus and Kaleb
Fast forward to present day, they're still around to celebrate my birthday with me. They even coupled a send-off party with my birthday. It was truly special. To keep a social life while being disabled can be hard, but my group of friends are great. They help make me feel like a person who isn’t sick, rather someone who just has to be away for awhile.  

This July was such a great month. I hate to see it end, but I cannot wait for the next year. I’m so blessed to see another year of life. Here’s to many more years.

3rd Annual Wiggin' Out

Sick Cells' third annual Wiggin' Out for Sickle Cell brought SCD warriors, drag queens and fabulous fashion together for one big night of fun and laughs. Thanks to our generous friends, family and the wider DC community, we were able to raise more than $2,665 on the hottest day of the summer!

A special thanks to the planning committee, James Holloway, Patrick Hackett, Venus Vahalla,
Tristan Lee, Bennett Kriete, and the Dirty Goose Bar in DC for having us. We couldn't have done it without you!
Wiggin' Out volunteers and planning committee
We were happy to see members of the SCD community at Wiggin' Out!

Thank You for Your Donations

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It's Hot. Stay Hydrated. 💦

It's summertime and the weather has been extra hot and humid this year, so we've compiled a few tips to stay hydrated this season. Do you have more tips? Share them with us! We'd love to share the knowledge with the larger community.

Need more reminders on why it's so important to stay hydrated?

"I try to take rest periods, I get a lot of sleep, I eat really healthy. I try to stay away from fast food and processed food. I stay hydrated and I just listen to my body.” - Anita, NYC, sickle cell SS

"It's definitely getting enough sleep, drinking a lot of water. I can tell when the white part of my eye starts to get yellow, that I'm not drinking enough water, I'm not getting enough sleep, maybe I didn't take hydroxyurea the day before. I make sure to cover all of those, and typically I'm fine." - Chanel, NYC, sickle cell SS

"Drink water. Drink lots of water, and stay hydrated." -
Javon, Chicago, sickle cell SS

"Stay hydrated and keep taking your medicine." - Ma'Kye, Indianapolis, sickle cell beta thalassemia

"I try to stay hydrated, first of all, and try to stay dressed warmly because I get cold very, very easily. The air conditioning bothers me so I try to dress warm and stay hydrated." Courtney, Indianapolis, sickle cell beta thalassemia

"Research and just kinda diving into it and learning about what vitamins and minerals are good for our body. Staying away from fatty and processed foods. Eating a lot of fruits and vegetables, that are high in water content because that again, is another source of hydration." - Amira, Memphis, sickle cell SS

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 our community faces, we hope to influence decision-makers and propel change.

Newborn Screening Saves Lives Reauthorization 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. H.R. 2507 has 35 cosponsors so far. To contact your Representatives to cosponsor H.R. 2507, click here.
 

Genetic Counselors Act: The National Society of Genetic Counselors is asking advocates to contact their Members of Congress in support of the Access to Genetic Counselors Act, H.R. 3235. H.R. 3235 would expand coverage of services provided by genetic counselors under the Medicare program. To contact your Representatives to cosponsor H.R. 3235, click here.

Voices from the Community: Jenai

Sick Cells met Jenai in Central Park in NYC. She lives with sickle cell SS and told us about her work in the community. 
Jenai in NYC
"I am a community researcher. I'm actually out here in Brooklyn looking at access to care. I'm really into patient-provider relationships, I think, especially for people with sickle cell and any chronic condition, the relationship you form with your doctor is so much more important, and even just the healthcare system in general.
 

A lot of people don't understand what sickle cell is and don't always know how to treat it. I've been to doctors that don't know what it is. Even moving, growing up, and having to start fresh. So understanding this relationship with someone who has a chronic condition and needs that continuous care is so important."

Upcoming 2019 Conferences

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 in their local offices. 

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. 


Rally for Medical Research Hill Day. September 19. The Rally for Medical Research’s goal is to ensure policymakers make medical research a priority and to ensure funding for the National Institutes of Health.

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.

Sickle Cell Disease Association of America (SCDAA) 47th Annual National Convention. October 9-12. In an effort to advocate for improved quality of life for individuals and families affected with SCD and its associated morbidity and mortality, the conference fosters the exchange of the latest scientific and clinical information related to the disease. This is done through the offering of innovative symposia, training seminars, interactive panel discussions, and special events.
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. 

News You Can Use

Billy Garrett Jr., the only NBA player with sickle cell disease, is an inspiration: Garrett: ‘It’s like a double whammy. Making it to the league and doing it with the disease. I hope it’s an inspiration to a lot of the kids with sickle cell.’ 

FDA gives sped-up review to Novartis’ sickle cell disease drug: The FDA granted priority review to crizanlizumab as a treatment for preventing painful, life-threatening events in sickle cell disease patients.

In Nigeria, your genetic makeup can decide if you get a second date: First date questions in many parts of the world usually revolve around hobbies or favorite TV shows. But in Nigeria, the first date conversation is more likely to be about your DNA than if you watch 'Grey's Anatomy' or where you like to vacation.
 
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