Jordin Sparks teams up with Novartis and SCDAA

From press release:

Novartis teams up with recording artist and actress Jordin Sparks and SCDAA to launch Generation S, an inspiring new sickle cell storytelling project

– Generation S offers the sickle cell community a powerful new way to share personal experiences and rewrite the story of an often-misunderstood disease

– Singer-songwriter and actress Jordin Sparks spearheads project, sharing emotional story of her stepsister’s battle with sickle cell disease

– Learn more at JoinGenS.com and register for a chance to meet Jordin live

NEWS PROVIDED BY

Novartis Pharmaceuticals Corporation

09:17 ET

EAST HANOVER, N.J., Sept. 20, 2018 /PRNewswire/ — Novartis is teaming up with Grammy®-nominated singer, film and Broadway star Jordin Sparks and the Sickle Cell Disease Association of America, Inc.  (SCDAA) to launch Generation S, a national sickle cell disease (SCD) storytelling project that will help rewrite the SCD story for generations to come. Generation S encourages anyone touched by SCD to help inspire the sickle cell community and educate the nation by sharing their story.

“Although I didn’t have the honor of knowing her throughout her journey, my stepsister Bryanna battled sickle cell disease her entire life,” said Jordin. “Even though we were stepsisters for a short period of time, it was the closest I’ve ever come to the disease and its struggles. I hope that Generation S will help to change how we think about sickle cell and I am proud to lend my voice to our collective stories.”

People can go to http://www.JoinGenS.com to share their experiences with sickle cell disease starting today through the end of November – as written stories, photos, or audio or video recordings. Submissions will start to be shared later in the fall, and the collection of stories from around the country will come to life in Feb. 2019. A few participants will also have the opportunity to meet Jordin in person and to work with a professional storyteller on a video to capture their personal experience with sickle cell disease.

“Through Generation S, we hope to help people understand more about sickle cell disease, including their family genetic risk factors for passing the disease on to their children,” said Beverley Francis-Gibson, President and Chief Executive Officer of SCDAA. “We are thankful for the opportunity to work with Novartis to share powerful stories about sickle cell disease that too often have gone unheard.”

While SCD is considered a rare disease, it is one of the most common genetic disorders in the US, and nearly 100,000 Americans are living with the condition.1,2 SCD is a lifelong condition that causes ongoing damage to blood vessels and organs.3 While people of all ethnicities can have the disease, people of African descent are disproportionately affected.4 People with SCD often experience recurrent episodes of acute, severe pain, which can eventually become chronic.5 Importantly, pain is more than a physical symptom – it can impact emotional and social wellbeing.6

“Working with the sickle cell community, we hope to educate people about the disease and raise awareness of the significant impact it has on the lives of patients and their loved ones,” said Ameet Mallik, Executive Vice President and Head, US Oncology at Novartis. “In partnership with SCDAA and Jordin Sparks, our goal is to inspire people who are touched by this difficult condition to help them to lead strong, vibrant lives.”

About Sickle Cell Disease
Sickle cell disease is a genetic blood disorder marked by painful crises, also known as vaso-occlusive crises (or VOCs). 7 These crises are the main reason why patients go to the hospital, and are linked to increased morbidity and mortality.8 Although sickle cell disease occurs predominantly in individuals of African descent, sickle cell disorders are also prevalent throughout the Mediterranean, the Middle East, parts of India, the Caribbean, and South and Central America.4,9

About Novartis
Located in East Hanover, NJ Novartis Pharmaceuticals Corporation is an affiliate of Novartis which provides innovative healthcare solutions that address the evolving needs of patients and societies. Headquartered in Basel, Switzerland, Novartis offers a diversified portfolio to best meet these needs: innovative medicines, cost-saving generic and biosimilar pharmaceuticals and eye care. Novartis has leading positions globally in each of these areas. In 2017, the Group achieved net sales of USD 49.1 billion, while R&D throughout the Group amounted to approximately USD 9.0 billion. Novartis Group companies employ approximately 125,000 full-time-equivalent associates. Novartis products are sold in approximately 155 countries around the world. For more information, please visit http://www.novartis.com.

Novartis is on Twitter. Sign up to follow @Novartis at http://twitter.com/novartis

For Novartis multimedia content, please visit www.novartis.com/news/media-library

For questions about the site or required registration, please contact media.relations@novartis.com

References
1.   Mandal A, Leger R, Graham L, et al. An overview of human genetic disorders with special reference to African Americans. Journal of Bioprocessing & Biotechniques. 2015 October 27. Doi:10.4172/2155-9821.1000e139.
2.   American Society of Hematology. State of sickle cell disease 2016 report. Available from: http://www.scdcoalition.org/pdfs/ASH%20State%20of%20Sickle%20Cell%20Disease%202016%20Report.pdf. Accessed on July 17, 2018.
3.   Steinberg M. Management of sickle cell disease. N Engl J Med. 1999;340(13):1021-1030.
4.   Jain D, Lothe  A, Roshan C. Sickle cell disease: current challenges. Journal of Hematology & Thromboembolic Diseases. 2015 Nov 10. Doi: 10.4172/2329-8790.1000224.
5.   Adams-Graves P, Bronte-Jordan L. Recent treatment guidelines for managing adult patients with sickle cell disease: challenges in access to care, social issues, and adherence. Expert Review of Hematology. 2016;9(6):541-552.
6.   Anim M, Osafo J, Yirdong F. Prevalence of psychological symptoms among adults with sickle cell disease in Korie-Bu Teaching Hospital, Ghana. BMC Psychology. 2016;4(53):1-9.
7.   Yawn B, Buchanan G, Afenyi-Annan A, et al. Management of sickle cell disease summary of the 2014 evidence-based report by expert panel members. JAMA. 2014;312(10):1033-1048.
8.   Puri L, Nottage KA, Hankins JS, et al. State of the art management of acute vaso-occlusive pain in sickle cell disease. Paediatr Drugs. 2018;20:29-42.
9.   Centers for Disease Control and Prevention. Sickle cell disease data & statistics. Last updated: September 16, 2011. Available from: http://www.cdc.gov/ncbddd/sicklecell/data.html. Accessed on August 4, 2015.

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September is Sickle Cell Awareness Month!

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Want to learn more?  Follow Sickle Cell 101  and Bold Lips For Sickle Cell on Instagram and educate yourself!

 

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Want to support a Fundraiser this month?  Follow Speezyland on Instagram or Facebook and buy a T-Shirt!

 

 

#sicklecellsux supporting #boldlipsforsicklecell Jordin Sparks Kristin Chenoweth
Jordin Sparks & Kristin Chenoweth

Want to create awareness?  Share this, the sites above, or simply post a pic of you puckering up with bright lipstick on your socials with hashtags #boldlipsforsicklecell #sicklecellsux #sicklecellawarenessmonth #IMAY

Feel free to tag @speezyland @sicklecell101 @boldlipsforsicklecell @themadgirlsinc

 

 

Love,

The M.A.D. Girls

Spark A Tattoo Revolution with Jordin Sparks!

The M.A.D. Girls have partnered with Tattoos for a Cause and Jordin Sparks to help save a child’s life.  Little Zahara is in need of a bone marrow transplant.  Now through October 31st, 2016 you can help start a revolution!  Here are the ways you can help:

1.)  Go to www.tattoosforacause.com and follow your heart!  You can download a tattoo designed by Jordin Sparks and her tattoo artist of choice, A.J. Larson. It really  is beautiful and the artwork has many hidden meanings within it!

2.) “Go” to this Facebook event!  Don’t worry, you won’t get a million notifications.  It’s informational.  But when you DO “go” it shows up in your timelines and you can help create a buzzzzzz!

3.) Share these images on social media with the hashtag #sparkatattoorevolution and when you get inked with the tattoo (or color it with crayons,) take a pic and post it!

 

THANK YOU!

xo,

The M.A.D. Girls

 

We know that Sickle Cell Sux. Do you?

Sickle Cell Anemia

September is Sickle Cell Awareness Month and we’ve got something fun for you coming soon!  Did someone say Tattoos, a cute little girl, and Jordin Sparks?  Stay tuned!

In the meantime, read up on it.  Go here to learn about it: www.sicklecelldisease.org

Make a difference!  Check out Bold Lips For Sickle Cell, take a selfie in some lipstick and post it on social media!  Use these hashtags  #boldlipsforsicklecell and #sicklecellsux (the name of our awareness campaign.)

Or encourage someone fighting this painful disease with a kind word or gesture.

Or buy a t-shirt, put it on, and post a pic on social media with the hashtag #sicklecellsux.

xoxo,

The M.A.D. Girls

Sickle Cell Sux!

September is Sickle Cell Awareness month!

Join the challenge called “Bold Lips For For Sickle Cell”

Suck face to your cell phone & post a selfie!

www.SickleCellSux.com

Put on the craziest lipstick and take a selfie!  LIKE THIS: Watch Video

Copy and Paste the following and post along with your photo!

#SickleCellSux #BoldLipsForSickleCell #SickleCellWarrior #IMAY

M.A.D. at  www.SickleCellSux  or www.TheMadGirls.com

FACEBOOK www.facebook.com/sicklecellsux

AND TWITTER www.twitter.com/themadgirlsinc

FOLLOW, LIKE US & TAG US!

We’d love to fill up our page and timeline with YOUR photos!

M.A.D.  Make A Difference!

M.A.D. Make A Donation!
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The M.A.D Girls