"Happy birthday Monette, hope you are well!"
Sikcell: People living with Sickle Cell
We still Hope
-
Ade Dotun
- Male
- Alexandria, VA
- United States
- Blog Posts (15)
- Discussions (124)
- Events
- Groups (3)
- Photos (20)
- Photo Albums (1)
- Videos (25)
Profile Information
- Profession
- IT Consultant
- Hobbies
- Videogames, Movies, Music and Computers
- How did you find this site?
- Created it
- How has living with sickle cell made an impact on your life?
- Its made me who I am today and thought me how to push thru in the face of adversity and pain.
- What are you hoping to gain by joining the site?
- Life long connections
- Your Website
- http://twitter.com/#!/sikcell
Ade Dotun's Discussions
Always tired in the morning
Started this discussion. Last reply by Derone Newell Apr 4, 2017. 19 Replies 0 Likes
Has this site been beneficial to you?
Started this discussion. Last reply by Ade Dotun Jan 7, 2016. 13 Replies 3 Likes
Ade Dotun's Videos
Ade Dotun's Photos
Ade Dotun's Groups
Gifts Received (6)
Red Ribbon
From Jennifer Fletcher
Red Ribbon
From karen graziano
Red Ribbon
From Gaynell Tutt-Jenkins
Thank You Note
From Chris
Stay Strong!
Latest Activity
Launch of new research platform for world sickle cell day!
AllStripes is transforming how families are involved in development of new treatments. They make it easy for patients and caregivers to contribute their de-identified medical records to advance research from home, at no cost. They just added sickle cell disease to their platform and are excited to have the community join the movement! You can accelerate drug development in Sickle cell disease, your experience with Sickle…See More
Ade Dotun's Blog
Launch of new research platform for world sickle cell day!
Posted on May 10, 2021 at 9:00pm 1 Comment 4 Likes
AllStripes is transforming how families are involved in development of new treatments. They make it easy for patients and caregivers to contribute their de-identified medical records to advance research from home, at no cost. They just added sickle cell disease to their platform and are excited to have the community join the movement! You can accelerate drug development in Sickle cell disease, your experience with…
ContinueSickle cell awareness month 2020!
Posted on September 8, 2020 at 5:18pm 1 Comment 2 Likes
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!…
ContinueHappy world sickle cell day 2020!
Posted on June 19, 2020 at 4:30pm 0 Comments 0 Likes
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.
Tapping Into the Warrior Mentality
My life has been characterized by tenacity, perseverance and determination; these values have been instilled in me through overcoming…
ContinueFDA approves voxelotor for sickle cell disease
Posted on November 27, 2019 at 7:01pm 0 Comments 1 Like
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…
ContinueThe Sickle Cell Podcast Feat. Ade
Posted on August 26, 2019 at 9:38pm 0 Comments 1 Like
Checkout sickle cell 101 latest podcast episode with me :)
https://anchor.fm/thesicklecellpodcast/episodes/Why-Sickle-Cell--Feat--Ade-Adeyokunnu-e52cs5
Comment Wall (98 comments)
- At 7:44pm on February 5, 2020,
Johanna Mack said…
Hello and thank you for accepting me. I wanted to learn a little more about your site. I have an organization and we do several events an I would be honor if I could share my events on your page.
- At 5:37pm on February 5, 2020,
Preston said…
I am doing very well! Blessed! Thank you very much! Hope you are doing well also!
- At 3:04pm on January 17, 2020,
David Chester said…
Thank you for your Birthday Wishes, I'm well as can be thank God. :)
- At 5:17pm on August 16, 2019,
Tamica Ennis said…
- Thank you for the birthday wishes. I’m well
- At 5:23pm on January 12, 2019,
Thank you for accepting me into the forum.
- At 2:52am on October 20, 2018,
Fahid Rabiu said…
Thanks Bro. Had a wonderful day.
- At 4:26pm on September 13, 2018,
Thanks Ade, had a lovely day.
- At 11:56pm on January 31, 2018,
- Thank you for letting me be here.
- At 5:54pm on November 15, 2017,
- Hey Ade,
It’s Sujata here...long time since been on here... was wondering do you know about the lates research currently at NIH for a pill medication for adults with SCA already in phase 2 one last phase and it’s ready for FDA approval that any hematologist can prescribe and the patient can pick it up! It might be doctor has to apply to a specialty Pharmacy. however for those adult like me living with SCA and no chance at stem cell transplant due to no blood relatives (since I’m adopted) also I’m not a candidate for a liver transplant even though my liver is at 1/2 function from Cirrosis (as you know iron-overload)!
This new pill will be able to change the morphology of all the sickle cells! It’s like cancer but only positive it targets the red cells in the bone marrow level that are predestined to be sickle and changes them before sent out in circulation to be come more oval like shape and size! Then the pill helps to make an over population so as to overwhelm any stragglers of sickle cells whom don’t change but the percentage is very low thacould be wrobu
Therefore these new (non sickle cells) will have not pointed parts to what I like to call ‘traffic jams’ especially around the joints, but as you know a crisis can happ anywhere at anytime even when we think we having a great day! The oval shape allows it to carry more O2 through out the system he and resolving other flowing issues such as preventing clots .
Amazing right a true miracle at least for me! And I thank God I’m was born in this generation with science and technology.
- At 12:05am on July 26, 2017,
- Saw your post about getting into UT grad school. Congrats! Austin has a pretty good network since the Sickle Cell Assoc of Texas Marc Thomas foundation is based there. They are a good group that I've helped out with before. I live in Houston but I'm in Austin regularly since I have family there. Best of luck with the move and if you need anything let me know.
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