World Sickle Cell Day
Hello Warrior Family! Don’t forget, today, Tuesday June 19th is World Sickle Cell Day. This was specially designated by the World Health Organization in 2009 to improve the education, research, and awareness of sickle cell disease on a global scale. For us warriors, it is like your sickle cell birthday!!! We have made it through another year!!! WOOHOO!
Warrior Tosin (Founder of Sickle Cell Warriors), will be hosting a live Facebook chat at 12:00-2:00pm PST (7-9pm GMT) on our Facebook page at www.facebook.com/
Celebrate with your family and friends on WorldSickleCellDay June19th that you have survived another year, have thrived, and have followed your dreams despite having SCD. Post your a pic of your or your warrior, either celebrating or in your best SuperWarriorPose. Use the hashtags and also post on your social media accounts #WorldSickleCellDay #WSCD2018 #SilentNoMore #IAm1in100000 #SickleCellWarrior #conquerSCD #sicklecell
Moment of Meditation and Prayer
We also want to take a minute at 06:19 am or pm in your time zone on June 19th for a moment of meditation and prayer. Wherever you are globally, take a breath to celebrate all the warriors who have ended their struggles. Only through the grace of God are you on this side of the ground. They walked in our shoes, they fought the good fight, they stood beside us mere days/weeks/months/years ago. We are no better than they are. The only comfort is that God saw fit to cease their suffering. Although they are no longer physically with us, as #SickleCellWarriors, their Spirits are Indestructible, they left their mark and they have earned their wings. Here’s to you Warrior, you are now forever free from this horrible pain. #conquerSCD #SilentNoMore #AshLived #IAm1in100000 #SickleCellWarrior
We have much to celebrate this year. Sickle cell disease now has a global focus in almost every country on this globe. There have been so many great strides in research in every continent with patients receiving bone marrow transplants, half-match transplants, autologous gene therapy treatments, and access to healthcare in places where previously there was none. More research dollars have gone into sickle cell disease. India has screened almost 15% of their population for SCD trait/disease, patients are living longer, and we have more hope for a Universal Cure for Sickle Cell Disease in our generation.
Join the Frontlines
Many more advocates have joined the #scd front lines. Millennials and Xennials have brought innovative ideas to advocacy, with creative campaigns that are reaching more people and having a greater impact than before. There is now a unified greater push to #conquerSCD, with new leadership in sickle cell for community advocates through the Sickle Cell Community Consortium, healthcare orgs through the Sickle Cell Disease Coalition, researchers through the Foundation for Sickle Cell Research, & improved legislation through the SCDAA. We are finally all working together and collaboratively bringing change to the plight of those with sickle cell. Keep up the great work everyone!
Just the Beginning
Have hope my fellow warriors, this is just the beginning! There are currently over 40 drugs in clinical development for SCD in the US, and Endari (concentrated L-Glutamine) powder is now available for warriors in North America. Your doctor will need to order it and pharmacy may need to get pre-authorization from your insurance to cover it…but this is amazing news. After over 19 years of anxiously waiting, we finally have a new FDA-approved drug for SCD. You have a new weapon in your arsenal. And this is the first of many…there are sev3al more coming down the pipeline. Soon we will have multiple treatment options and you will be able to try many different approved medications, alternative remedies, and conventional medicine. The drought will soon be over, so hang in there my warrior brothers and sisters.
Thank You!
I can’t stress enough that all this would not have been possible without each and every one of you. So thank you for joining together, sharing your experiences, showing up and standing up for sickle cell. A squeaky wheel gets the oil and we are making an impact in our individual corners. We have come a long way. No matter what happens, DO NOT GIVE UP! We are almost there folks, so keep fighting on, every single day, until sickle cell is a thing of the past.
Have a wonderful and happy World Sickle Cell Day 2018! Don’t forget to post a pic of you and your warrior. Use the hashtags and also post on your social media accounts #WorldSickleCellDay #WSCD2018 #SilentNoMore #IAm1in100000 #SickleCellWarrior #conquerSCD #sicklecell
Best Regards,
ASH has made conquering SCD around the world a top priority and is leading efforts to translate research into cutting-edge therapies and cures, increase access to care, educate health care providers, and encourage policymakers to make strides in universal screening and care efforts. In 2016, the Society founded the Sickle Cell Disease Coalition to amplify the voice of the SCD stakeholder community, promote awareness, and improve outcomes for individuals with SCD globally.