We still Hope
For sickle cell awareness month this year, the cure sickle initiative launched a campaign on what a cure means to you. See the campaign here: https://curesickle.org/sickle-cell-awareness-month
Chime in below and add yours as well!
Added by Ade Dotun on September 15, 2023 at 10:35am — No Comments
The ASCEND study is seeking individuals who are taking Oxbryta to participate in a 3 month, app based data collection study. Up to $125 in gift cards will be provided in return for participating.
Learn more at …Continue
Added by Ade Dotun on September 30, 2022 at 6:07pm — No Comments
The Sickle Cell Consortium and Cayenne Wellness Center host “The 3rd Annual 24 Hour Sickle Cell-a-thon Celebration: Sickle Cell Has No Color.” Today 12 AM EST to 11:59 PM EST. They will be sharing the many different ethnicities with sickle cell from around the world. If you have not had the chance to join us in the past years, you’re in for a treat. For 24 hours, we Live stream different talks, activities, speakers, games, and much more with different organizations from around the…Continue
Added by Ade Dotun on June 19, 2022 at 8:08pm — No Comments
Happy sickle cell awareness month Fam! Hope you are all doing well and doing something to help raise awareness this month of September. I did a video collab with the SAMI organization on confidence below, let me know you know your thoughts and what are some things that has helped you to build confidence in your journey so far? Look out for another podcast collab coming soon before the end of the month as well! Stay blessed!…Continue
For world sickle cell day this year, I wrote a blog about tapping into your warrior mentality, check it out and my tweet in the links below.
My life has been characterized by tenacity, perseverance and determination; these values have been instilled in me through overcoming…Continue
Added by Ade Dotun on June 19, 2020 at 4:30pm — No Comments
On November 25, 2019, the Food and Drug Administration granted accelerated approval to voxelotor (Oxbryta, Global Blood Therapeutics) for adults and pediatric patients 12 years of age and older with sickle cell disease.
The primary efficacy outcome measure was Hb response rate defined as an Hb increase of >1 g/dL from baseline to week 24. The response rate for voxelotor was 51.1% (46/90) compared to 6.5% (6/92) in the placebo group (p<0.0001). Additional efficacy…Continue
Added by Ade Dotun on November 27, 2019 at 7:01pm — No Comments
Checkout sickle cell 101 latest podcast episode with me :)
Added by Ade Dotun on August 26, 2019 at 9:38pm — No Comments
Its been a while, hope you are all well! I just wanted to share this recent successful potential future cure for those who have not heard about it yet. It was featured on CBS 60 minutes and promising as a potential cure in the future.
Please share what you are doing this month in honor of our month of the year!
Hope you are all well and enjoyed your weekend. I just wanted to pass along some wonderful information shared by a fellow warrior. The National Heart, Lung, and Blood Institute is having a "Novel, Innovative Tools to Increase Public Awareness and Knowledge of Sickle Cell Disease Undergraduate Challenge” and would like to encourage those who are eligible to please …Continue
Added by Ade Dotun on November 4, 2015 at 10:17am — No Comments
New site I found where you can look for trials in your country:…Continue
Just to get some convo going, Please share with the community what your average day is like and what your favorite part of the day is. For me its when i leave work n land on my bed
I was inspired to post this poem from Alexia's blog post called "no title". This poem helped me out a lot:
I never saw a wild thing
sorry for itself.
A small bird will drop frozen dead from a bough
without ever having felt sorry for itself.
Added by Ade Dotun on November 12, 2010 at 11:30pm — No Comments