Elle Cole’s Post

3 Powerful Lessons I Learned from Global Genes Week in Rare: 1️⃣ Tell your story – It will inspire others and help you remember your “why.” Your personal journey can light the way for others and fuel your own passion. 2️⃣ Legislative advocacy is never-ending – Even when laws are passed and funded, there is always more work to be done. Stay engaged to keep the momentum going. 3️⃣ Our voices are stronger together – In the rare disease community, unity reveals how much we have in common. The more we connect, the more powerful our advocacy becomes. Pictured with Shannon Bennett and Piper Paul. Want to learn more about sickle cell disease? Follow my page for insights and updates! #GlobalGenes #RareDisease #SickleCell #Advocacy #CommunityPower #WeekInRare #RareAdvocacySummit

ASH has new research priority updates. Read the announcement here: https://ow.ly/OXBr50TvoHB

3 Practical Ways for Health Advocates to Safeguard Peace and Mental Health Online https://lnkd.in/e8d5ES3C #mentalhealth #ibelieveintherapy #chronicillness #emotionalwellness #mentalwellness

Tune in and listen to the #throughthegenes podcast!

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I’m a rare disease mom, caregiver, author, podcaster, and speaker, and some of my most meaningful moments come from connecting with fellow mothers in the sickle cell community. The love and support within this community are truly unparalleled. This week, however, we’ve faced a deep sense of pain and frustration as a medication that had received accelerated approval was withdrawn. Sickle cell disease was first documented in the U.S. in 1910, and it took over a century for us to see our first FDA-approved treatment. For so long, many in our community have felt unseen and unheard. But in recent years, it seemed like we were finally turning a corner, with more treatment options on the horizon. I’m writing today to remind our community not to lose hope. There are still more options in the pipeline. Don’t let fear or discouragement take over. This setback, though disheartening, is part of the journey. Our lives—and the lives of our loved ones—matter. While we may be feeling a range of emotions right now, remember that sometimes things get worse before they get better. We must stay committed to participating in clinical trials and supporting research so that new, effective treatments can continue to emerge. Let’s stand firm, keep learning, and remain open-minded. As the song says, “Trouble Don’t Last Always.”

It's #SickleCellShadesDay! Today, we raise awareness of the impact of retinopathy on individuals with sickle cell disease. Many in our community experience vision challenges, and we wear shades to show our support. Let's come together and help the SICKLE CELL CONSORTIUM (SC3) continue their incredible work. Your donations can make a real difference. Support SC3 and donate today: (https://lnkd.in/eqGHi3iN) #SickleCellAwareness #ShadesDay #SupportSickleCell

It has been eye-opening and tremendously empowering to attend Global Genes “Week in Rare.”

The 16th Annual SCD Educational Summit in Torrance California was a huge success! One of the highlights of my trip was speaking about the STAC - Sickle Cell Trait Awareness Campaign: CA and sharing about the “I Believe in Therapy Campaign.” Another huge highlight was seeing Judy Johnson (81) who is an author and sickle cell Warrior! Keke Shepherd who I grow up watching on It’s Showtime At The Apollo and executive director of the KISS FOUNDATION USA INC a sickle cell nonprofit organization was also in attendance. If you’ve never been to a sickle cell conference the love and joy in the room is infectious, it’s one of the warmest communities on earth!