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We're So Thankful  

This year, we're especially thankful for the many people who help Sick Cells operate each day. From Wiggin' Out to our storytelling series, Sick Cells only can accomplish its goals with the help of others who offer us their time and energy.

This month, we'll thank the many volunteers that have helped Sick Cells this year, provide some policy updates and honor a warrior in our spotlight interview. We'll have some News You Can Use, but first...

A Minute With Marqus

Living with a disability requires a lot of support. Sometimes even more support than a person is willing to admit. You, along with your family, have to manage doctors appointments, blood work, portacath flushing, medication refills, taking your daily medication, and so on. Having a support group with other families living with similar lifestyles, is a important tool. It breaks the isolation.
Marqus waits at his neurology appointment. 
When I was a kid, I used to go to my day hospital for a transfusion and have so much fun because the parents and siblings would socialize together. My family would set up a game of Uno and the other kids would play an intense card game while we were all getting transfused. The hospital would plan fun events for relaxing days outside of the hospital setting. It was a good time. These types of events let us know that despite all the stressful things we go through, we go through them together.

As an adult, holiday parties, family Uno games during blood transfusions, and picnics all went away. It's assumed that we no longer needed these things. There is a need for a support system for the adults like when I was a kid.

I have been working with other sickle cell advocates in my area to start a new support group for sickle cell families in the western suburbs of Chicago. The sickle cell population is growing at my hospital and in this our area. My goal is to capture the beautiful moments from my childhood support groups and energize my local sickle cell community.
 

Giving Tuesday ❤️

On November 27, Sick Cells participated in Giving Tuesday, a global day of giving fueled by the power of social media and collaboration. Together, we raised more than $1,500 for Sick Cells! Thank you to everyone who donated on Tuesday. We'll use your donations to continue sharing stories from the community in 2019 and beyond.

Policy Corner: Lame Duck Session and S.2465

On October 11, S.465 passed the Senate, and the bill is currently in the House and needs your help to get passed before end of year. To help everyone contact their representative, Sick Cells teamed up with various leaders in the rare disease and sickle cell space to create a handy toolkit! To date, the community has sent 223 emails to 132 members of Congress in addition to phone calls and pushes on social media. 
There are two weeks left in the lame duck session in Congress. Make sure you contact your current House member. We've included images by Sickle Cell 101 to share on social media with the hashtag #Votesicklecell.  
Save these pictures and post them on your Twitter with the hashtag #Votesicklecell

Sick Cells Champions 🏆

This month, Sick Cells is honoring the top donors from 2018. Please join us in thanking Vanessa Valentine, Jillian Rountree, Deborah Tainter and the kind gentlemen from the Stonewall Kickball League in DC. With every donation, we're able to continue the Sick Cells mission and we are so grateful. 
 
Donate

I Donate to Sick Cells Because...

There are various ways to donate to nonprofits. Many people donate their time and services. This month, Sick Cells wants to recognize volunteers who donated the most time and valuable pro bono services.
Emily (left side) at Sick Cells' annual Wiggin Out fundraiser. Patrick (right) conducts an interview in 2016.

Emily Gordon coordinated Wiggin' Out for a second year. She worked over 40 hours scheduling meetings, managing models, reserving the venue, and walking from door-to-door for donation. Emily donated supplies, printing services, and food for the fundraiser. Outside of Wiggin' Out, Emily volunteers for many other Sick Cells activities.

Patrick Hackett served on the planning committee for Wiggin' Out. He worked alongside the team in rallying participants to attend the event. Patrick also donates his expertise and time for the Sick Cells newsletter and works with the communications team as an adviser on strategy.

Michelle (left) interviews Sick Cells participant, Dennis, at UIC in 2016. Brendan (right) in Washington, after Wiggin' Out fundraiser. 

Michelle Wesley donates pro bono legal services to Sick Cells. She is a long-time supporter of Sick Cells and volunteered as an interviewer in 2016 during Sick Cells' first storytelling collection effort, and has the best interest of the organization at heart.

Brendan Daley donates pro bono media training. Co-Founders Marqus Valentine has appeared in multiple media outlets. In preparation, Brendan has met with Marqus Ashley and Francesca Valentine various times, to prepare them for the features.

"Sick Cells is important to me because telling the stories of patients and families' experiences is so important to drive greater awareness and advocacy in the pursuit of new therapies and a cure" said Brendan.

Tristan (top, right) shares his story with Wiggin' Out attendees. Terri (top, left) takes a picture outside of her member of Congress during Rare Disease Week. Deborah Tainter (bottom) helps prepare gifts for Sick Cells participants.

Deborah Tainter donated over 80 hours of time to Sick Cells Donor and Participant Stewardship Program. Deborah is a life-long friend of the Valentine family and spent four months verifying addresses, packing tea, and mailing gifts to the Sick Cells network.

Tristan Lee headlines the Wiggin' Out fundraiser. For the second year in a row, Tristan dressed the models, tailored his clothing for their sizes, and along with his mother, drove eight hours in one day for the fundraiser. 

Terri Booker donated over 40 hours coordinating Rare Disease Week. Terri reached out to SCD advocates across the US and alerted them about the event. Terri wrote funding proposals, donated pro bono legal advice, and supported us during the week. Terri meets regularly with Sick Cells to review policy letters.

Rare Disease Week 2019

Travel stipends close on December 14 for Rare Disease Week this year! Event registration opens at the end of December. Key dates for 2019 are the following:
  • Sunday, February 24: Documentary Screening
  • Monday, February 25: Legislative Conference
  • Tuesday, February 26: Lobby Day Breakfast & Lobby Day
  • Wednesday, February 27: Rare Disease Congressional Caucus Briefing & Rare Artist Reception
  • Thursday, Feb. 28: NIH Rare Disease Day
For more information about Rare Disease Week and how to get involved with the EveryLife Foundation, check out their website or email Lindsey Cundiff at Lcundiff@everylifefoundation.org. 
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. 

Upcoming Conferences

Rare Disease Congressional Caucus Briefing, December 4, Rare Disease Legislative Advocates in coordination with Rare Disease Congressional Caucus invite the public to a lunch briefing.

2019 CMS Quality Conference, January 29 -31, 2019, Join thought leaders in American health care quality improvement at this premier learning and action event.

National Hispanic Medical Association (NHMA), April 11-14, 2019: Call for abstracts for the 23rd Annual NHMA Conference.

A Warrior Goes Home

Jazmine Rivera, SCD advocate and beauty guru, gained her warrior wings. She passed away on November 28, 2018.

We first met Jazmine Rivera in 2016 by way of her Youtube channel, Beauty Within Sickle Cell. We were captivated by her energy and passion for both beauty and the sickle cell community. From that moment, we knew we had to speak with her. 

Jazmine was the first interview that Sick Cells conducted and the photo series published online. Jazmine and the Rivera family openly shared their journey with us, and we are eternally grateful to have known such a magnetic spirit. She will be truly missed. 

To support Jazmine's family, the Sickle Cell Community Consortium has set up a
GoFundMe in her honor. 
Jazmine and her dog Angel, prepping for a Sickle Cell Sunday video. 

To celebrate Jazmine's 25 years of life and honor her work highlighting the beauty within sickle cell, we are re-featuring her spotlight interview from 2016 below.

The Sick Cells team spent a lot of time laughing on the phone with Jazmine Rivera, an upbeat and positive 23-year-old student at California State University.  Her mom, Maria, joined in on our conversations and even took the Valentines on a walk, via FaceTime, around their favorite park near their home.

Jazmine Rivera has 
sickle cell SD disease, which is another form of SCD.  While her family is from Mexico and Puerto Rico, sickle cell SD disease is most common in India, Africa, and Saudi Arabia. Jazmine experiences pain episodes and takes the same medications as Marqus, who has sickle cell anemia. 

Jazmine waits at her doctors appointment.
Sick Cells (SCs): Tell us about your YouTube Channel, BeautywithinSickleCell.

Jazmine Rivera (JR): Well, when I saw that there was so little information on SCD on YouTube and a lack of people advocating with it, I decided to create my channel. This channel focuses on raising awareness, advocating, and providing information on SCD.  I also share my experience and story.

I have a passion for beauty and fashion too. I wanted to incorporate my passion in my channel. In my videos, I discuss 
various beauty and cosmetic topics to make my channel more appealing. I do this with hopes to also educate people who aren’t familiar of sickle cell by capturing their attention through my beauty videos.
Jazmine receives a blood transfusion at her local infusion center.
SCs: Are you in school? What are you studying?

JR: I am attending a California State University where I am studying Business Administration, with a concentration in Marketing. I should graduate next year with my Bachelors of Science in Business administration, which will be one of the biggest accomplishments in my life. 

SCs: Has sickle cell affected your schooling?

JR: Most definitely. I had to miss countless days, especially when I was younger, like in K-12 school. I had to miss participation activities and even field trips. I’ve missed deadlines for my assignments, but luckily I've been able to make them up in the end.

When I was younger, I would get a major pain crisis in school and would have to go home. Now that I am in college, when I get a major pain crisis, I'll take my pain medications and try to stay in school. If it does not improve, I'll leave. 

 
SCs: What are other barriers to treatment that you have experienced?

JR: The insurance wants for patients, like me, to avoid long stays at the hospital because of sickle cell crisis. The medical center we go to has a chemotherapy suite and 
an infusion center where they give priority to cancer patients. When I need services, they make it extremely difficult. Sometimes I need blood transfusions or IV hydration. 
Jazmine's Mom joins her for a Sickle Cell Sunday discussion about Multiple Care Givers
SCs: Do you feel that your race has influenced treatment of your sickle cell disease?

JR: I have noticed that since I am Latina, the ER doctors are shocked to see that I am a Latina sickle cell patient. Sometimes they do not even believe I have sickle cell and will run tests to prove if I have it or not. Other than that, my regular hematologists have never been biased of my race and have always treated me with respect.
(Left to Right): Jazmine; Jazmine's Abuela, Maria, Jazmine's father, Moises, and Jazmine's brother, Johnathan
SCs: What gives you hope for sickle cell disease? 

JR: One day we can find a cure with our efforts of advocating. It is important that we speak up and get the respect that we, as sickle cell patients, deserve. It gives me hope to see that many people are advocating for sickle cell disease and getting their stories out there.

News You Can Use

Orphan Drug Act Resolution Introduced in Congress: Senator Hatch and Representatives Lance and Butterfield introduced a resolution that heralds the success of the Orphan Drug Act (ODA) and calls for continued support of the legislation.

Novartis Announces Funding for Projects Aimed at Supporting Sickle Cell Disease Community: For this year’s Solutions to Empower Patients (STEP) program, global healthcare company Novartis has announced it will fund up to five original and creative ideas to help sickle cell disease (SCD) patients and their families.

Call for nursing courses to include sickle cell and thalassaemia: The survey found 71.1% of the student respondents had not had any formal teaching time on sickle cell disease throughout their education. Of those that did, only 16.7% of nurses in the sample had received a taught session of one hour or longer.
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