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

Sickle Cell Disease Takes Another Life

www.gofundme.com/BryscornerBy the age of 16 yrs old, Bry faced more adversity than most people will ever face in a lifetime in her battle against Sickle Cell Disease. Last week, Bry lost her fight with Sickle Cell and God took her home.

Help us fulfill her wish (DONATE), help us increase awareness (SHARE THIS POST), and help us PRAY for Bry’s family, and all those still fighting against this horrible disease. To learn more about how you can help-please click HERE.

As of 2015 about 4.4 million people have sickle-cell disease while an additional 43 million have sickle-cell trait. SCD (Sickle Cell Disease) affects approximately 100,000 Americans. SCD occurs among about 1 out of every 365 Black or African-American births. SCD occurs among about 1 out of every 16,300 Hispanic-American births. About 1 in 13 Black or African-American babies is born with sickle cell trait (SCT). SCD kills over 100,000 people every year. It’s time for a cure. Donate today to spread awareness and support those suffering this devastating disease.

Thank you!

The M.A.D. Girls ❤️

#sicklecellsux #bryscorner

Go Home Harvey! Help Families Now.

Houston Police SWAT officer Daryl Hudeck carries Catherine Pham and her 13-month-old son Aiden after rescuing them from their home surrounded by floodwaters from Tropical Storm Harvey, Aug. 27, 2017, in Houston. Photo by David J. Phillip/AP

We are The M.A.D. Girls…our mission is to HELP. Period. I’m Jodi Jackson and am experiencing Hurricane Harvey right now with millions of others. Right now, I’m one of the few lucky ones who is dry. But people are losing EVERYTHING. Shelters are to capacity. Friends are hunkered down on their 2nd floor with no power. Refrigerators are floating. Trees are falling. People are being rescued. It is truly unbelievable. THIS. CITY. IS. UNDER. WATER.

In February, Nichet, Jordin, and I were in Houston for the annual Jordin Sparks Experience during Super Bowl week where we partnered with local organizations to make a difference in the community. And we did. We forged relationships with some amazing local people and charities and want to do it again.

We want to help. And we will help. If we don’t raise a dime, we will still help. We are on the ground and willing to get our hands dirty. We are tiny but MIGHTY and we WILL make an impact on behalf of all of YOU. And not just now, but for the long haul. This is my city. We will be hurting and rebuilding physically and emotionally for years to come. We are ready to dig in and stay and make a positive impact for the coming weeks, months, and years.

100% of your donations will go directly to help as many as we can during and after this catastrophic event and we will show you exactly what we are doing with it. We are already identifying families that we can help right now. But believe me…there will be needs for a LONG time. We are preparing to get a crew together to help cleanup and rebuild in the aftermath.

If you want to help this is how:
❤️ Pray for this city and the millions affected.
❤️ Donate to help us purchase supplies and help those with immediate needs now.
❤️ Donate regularly to help cleanup and rebuild going forward. Our immediate goal is only $20,000, but we hope to raise much more to keep going long term!

Please share, share, share! Here is the direct link: www.gofundme.com/gohomeharvey

You can follow my Harvey Experience on Facebook www.facebook.com/jodibsparks

#GOHOMEHARVEY

Thank you! Jodi

(From 8/29/17 Go Fund Me story)

The M.A.D. Girls, Inc. is a 501c3 non-profit corporation and your donation is tax deductible.

 

Jordin Sparks Brings Songs, Smiles and Teddy Bears to Houston

This month we celebrated 10 years of the Jordin Sparks Experience at the Super Bowl in Houston.  It was amazing!  The best part were the three Teddy Bear Picnics that we held during the week.  The photos and videos speak for themselves.

We all hung out with the kids making Valentines, eating pizza, playing basketball and racing outside and at each one she presented the bears with an inspirational message and sang songs.  It was super encouraging for everyone there…even the grown ups!

If this doesn’t warm your heart, we don’t know what else will!  Check out all the smiles that were created!

Teddy Bear Picnic #1 at Bo’s Place:

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Teddy Bear Picnic #2 at The Women’s Home:

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This little girl LOVES her Teddy Bear! Click here to watch!

Teddy Bear Picnic #3 at The Forge for Families:

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Make sure to watch this video!

Doesn’t it look like fun? Don’t all kids deserve a special Teddy Bear?  If you’d like more info on how you can make a difference and sponsor a Teddy Bear Picnic, contact us!

xo,

Jordin, Jodi, & Nichet

The M.A.D. Girls

P.S.  A special thank you to Houston Texans’ Christian Covington and Wiesner Auto for graciously donating their time and transportation!  We love you!

FREE Teddy Bears! 

We are giving away two FREE Teddies left over from the 2017 Jordin Sparks Experience Teddy Bear Picnics! Bears have an inspirational notecard signed by Jordin in a removable lanyard.  All you have to do is go to www.instagram.com/themadgirlsinc and follow the directions! 

#JSE2017 Teddies from our Teddy Bear Picnics



If you’d like to secure one of these cuties, you’ll get one free as a thank you for supporting our endeavors with any tax deductible donation of $250 or more. 

❤,

The M.A.D. Girls 

Thank You Larry Fitzgerald, From Jordin Sparks

Jordin Sparks & Larry Fitzgerald. Jordin Sparks Experience 2015.
Jordin Sparks & Larry Fitzgerald. Jordin Sparks Experience 2015.

(THIS IS A REPOST FROM JORDIN SPARKS INSTAGRAM POST.)

I want to take a moment to acknowledge my friend, Larry Fitzgerald. You all know what he does on the field. His work ethic, production and focus. Then the commercials, the lights and the interviews. You know he’s one of the best in the NFL right now & definitely one of the best to ever play. But it’s what he does when the cameras are off, when the fans go home and uniform is hung up to dry for the next game.
His heart is bigger than anything you’ve seen displayed on the field. Putting the game on his shoulders, in the playoffs last year, against Green Bay? His heart is bigger. Taking it to the house in the last two minutes of Super Bowl 43? Yep, his heart is still bigger. Standing tall, at the podium, after one of the biggest disappointments in his sports career? His heart is bigger still.
No matter where he is, Larry is always wanting to make an impact on the community and the youth.

Jordin Sparks & Larry Fitzgerald. Starkey Hearing Mission 2011.
Jordin Sparks & Larry Fitzgerald. Starkey Hearing Mission 2011.

Whether it’s in his hometown of Minneapolis, the AZ community, across the country or abroad. We both traveled to Rwanda, with Starkey Hearing, to fit & give free hearing aids to anyone who needed them. Hours would pass and he, just like the incredible Bill Austin, would still be fitting kids or parents until the last person was seen. I was inspired by that and challenged to give until I can give no more.

He was my friend before anyone knew my name and has always been so supportive of me, my family, career & charity work with The M.A.D Girls & Jordin Sparks Experience. He’s been to almost every single one, with that trademark smile of his, and with a willing spirit. Looking back through these pictures, it’s amazing to see how much time has passed…and we’re still running on fumes!
Today, as you are one of three finalists up for the Walter Payton Man of the Year Award, I want to say congratulations. It would take days to list all the amazing things you do for others but I’ll let people discover that on their own. You deserve it more than anyone I know.
You may be ‘the man of the year’ to some but, to me, you’re just my confidant and friend and I’m honored to call you so.
Thank you for all you do,

~J.

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Jordin Sparks & Larry Fitzgerald. Celebrity Fight Night 2011.
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Larry Fitzgerald & Jordin Sparks. JSE Tampa 2009
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Larry Fitzgerald & Jordin Sparks. JSE Miami 2010.
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Jordin Sparks & Larry Fitzgerald. MLB Celebrity softball game. 2011.
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Larry Fitzgerald, Jordin Sparks, Calais Campbell, Rowlan Hill. JSE Arizona 2015.
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Dan Williams, Calais Campbell, Jordin Sparks, & Larry Fitzgerald. JSE Arizona 2015.

 

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Jordin Sparks & Larry Fitzgerald. 1st Down Fund event at Dominick’s Steakhouse 2016.