Ade Dotun's Posts - Sikcell: People living with Sickle Cell2024-03-29T13:02:09ZAde Dotunhttps://sikcell.com/profile/adehttps://storage.ning.com/topology/rest/1.0/file/get/1956902982?profile=RESIZE_48X48&width=48&height=48&crop=1%3A1https://sikcell.com/profiles/blog/feed?user=3kw91huzgb17l&xn_auth=noWhat does a cure mean to you campaigntag:sikcell.com,2023-09-15:2131823:BlogPost:952422023-09-15T14:35:28.000ZAde Dotunhttps://sikcell.com/profile/ade
<p>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: <a href="https://curesickle.org/sickle-cell-awareness-month">https://curesickle.org/sickle-cell-awareness-month</a></p>
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<p>Chime in below and add yours as well! </p>
<p><img src="https://curesickle.org/sites/scdc/themes/scdc/images/ACureForSCDWould_X_AdeAdeyokunnu_1.jpg" width="527" height="297"/></p>
<p>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: <a href="https://curesickle.org/sickle-cell-awareness-month">https://curesickle.org/sickle-cell-awareness-month</a></p>
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<p>Chime in below and add yours as well! </p>
<p><img src="https://curesickle.org/sites/scdc/themes/scdc/images/ACureForSCDWould_X_AdeAdeyokunnu_1.jpg" width="527" height="297"/></p>Taking Oxbryta? Want to be part of exciting research in SCD and make your voice heard?tag:sikcell.com,2022-09-30:2131823:BlogPost:936252022-09-30T22:07:02.000ZAde Dotunhttps://sikcell.com/profile/ade
<p dir="ltr" style="text-align: center;"><strong>RESEARCH OPPORTUNITY</strong></p>
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<p dir="ltr"><span>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.</span></p>
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<p dir="ltr"><span>Learn more at</span><span> …</span></p>
<p dir="ltr" style="text-align: center;"><strong>RESEARCH OPPORTUNITY</strong></p>
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<p dir="ltr"><span>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.</span></p>
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<p dir="ltr"><span>Learn more at</span><span> </span><a href="http://www.foliahealth.com/ascend" target="_blank" rel="noopener"><span>www.foliahealth.com/ascend</span></a><span>.</span></p>
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<p dir="ltr"><span>Let me know if you signed up to connect you with someone who can answer any questions you may have!</span></p>
<p dir="ltr"><span><a href="https://storage.ning.com/topology/rest/1.0/file/get/10831829300?profile=original" target="_blank" rel="noopener">OXBRYTA_ASCEND_Study%20Flyer_Long%20%281%29.pdf</a></span></p>HAPPY World Sickle Cell Day 2022!tag:sikcell.com,2022-06-20:2131823:BlogPost:936912022-06-20T00:08:20.000ZAde Dotunhttps://sikcell.com/profile/ade
<p>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…</p>
<p>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 world.</p>
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<p>Click this link to watch live on <a href="https://r20.rs6.net/tn.jsp?f=001vxj1rLEur3cJT70P4E1fJ_AXp_C6_sTXJlX5foLf-l_z7CwVeIOWqD8JtZPBymGae5G6yqo0IaV00XsvT2xn8xJp3LQxYmMb94O6qkXeqeCf4msTjvbBpIGlIA0Wi4xVG_aK0niimMNcZXIuuS2PjcNJcNr90DpaDU1YnAKu1saUYwMLu53xTbkZMZdfjLOoET88HX6WHILIUHzccxw8pTv3FYbIuXVHy38I3mzMqau44LKEys3ycAAQQ_3GtZe7M02aTDGN9zvzPRPSkg83ed0eKU_DuWOvaqOjW2eFV8wJxXnzMkKG2os9Cw6vdOzBhsBFfQqVkNdVHGezMqKzLeoZNPomojwHxgszBRJNZIP6tzjvKoYe1Wl6wpK-ijY3tNYEofcdCAVZWG9267PowGNqXLaqH5osLtS27LY_Gnv8E1tvoQJpZKnUr561vACFJkAVRs1Wsq7ms1rcPH-DBw==&c=qoF-c5ev6ECfrQo1m6CjBNh77wLzEwrpJh9rEekm4e4v0i9TMmReSw==&ch=uaDKi-46koNMViATWw8WFohqqfc1NFsYkSCZnKZzclc_OElNAo2q1w==" target="_blank" rel="noopener">Facebook</a> and join your community and celebrate World Sickle Cell Day</p>
<p>Also, check out Sicklecell 101's put your ginger down challenge <a href="https://twitter.com/sikcell/status/1538644825741967361?s=20&t=3W9Urp3K5w0Po9wtKaFAzQ" target="_blank" rel="noopener">here</a>:</p>
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<p>How are you all celebrating?</p>Happy sickle cell awareness month! How are you celebrating?tag:sikcell.com,2021-09-12:2131823:BlogPost:905122021-09-12T01:00:00.000ZAde Dotunhttps://sikcell.com/profile/ade
<div class="" dir="auto"><div class="ecm0bbzt hv4rvrfc ihqw7lf3 dati1w0a" id="jsc_c_24"><div class="j83agx80 cbu4d94t ew0dbk1b irj2b8pg"><div class="qzhwtbm6 knvmm38d"><div class="kvgmc6g5 cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q"><div dir="auto" style="text-align: start;">I’m excited to collaborate with Allstripes as an ambassador, especially in honor of sickle cell awareness month! They provide a comprehensive view of patient health records and research for rare diseases. Check out the…</div>
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<div class="" dir="auto"><div class="ecm0bbzt hv4rvrfc ihqw7lf3 dati1w0a" id="jsc_c_24"><div class="j83agx80 cbu4d94t ew0dbk1b irj2b8pg"><div class="qzhwtbm6 knvmm38d"><div class="kvgmc6g5 cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q"><div dir="auto" style="text-align: start;">I’m excited to collaborate with Allstripes as an ambassador, especially in honor of sickle cell awareness month! They provide a comprehensive view of patient health records and research for rare diseases. Check out the <a href="https://www.allstripes.com/blog/sickle-cell-medical-records" target="_blank" rel="noopener">article</a> and <a href="https://www.allstripes.com/sicklecell?refer=1Yn15GZVmN" target="_blank" rel="noopener">sign up</a> for their platform if you find it helpful! How are you celebrating SCD month? Comment down below and let me know what you think of the platform!</div>
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<p><a href="https://www.allstripes.com/sicklecell?refer=1Yn15GZVmN" target="_blank" rel="noopener"></a></p>
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<p><iframe src="https://www.youtube.com/embed/bZk0x2DKPwU?wmode=opaque" allowfullscreen="" width="560" height="315" frameborder="0"></iframe>
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<p><a href="https://storage.ning.com/topology/rest/1.0/file/get/8911460079?profile=original" target="_blank" rel="noopener">AllStripesResearch.pdf</a></p>Sickle cell awareness month 2020!tag:sikcell.com,2020-09-08:2131823:BlogPost:768862020-09-08T21:18:06.000ZAde Dotunhttps://sikcell.com/profile/ade
<p>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!…</p>
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<p>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!</p>
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<p><iframe width="560" height="315" src="https://www.youtube.com/embed/Azsy9BN27Xk?wmode=opaque" frameborder="0" allowfullscreen=""></iframe>
</p>Happy world sickle cell day 2020!tag:sikcell.com,2020-06-19:2131823:BlogPost:757132020-06-19T20:30:00.000ZAde Dotunhttps://sikcell.com/profile/ade
<p>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.</p>
<h2 style="color: #d0021b; font-size: 2em; line-height: 1.25em; font-weight: bold; margin-top: 1em;">Tapping Into the Warrior Mentality</h2>
<p style="font-size: 1.06667em; line-height: 1.5; margin: 0 0 1.25em;">My life has been characterized by tenacity, perseverance and determination; these values have been instilled in me through overcoming…</p>
<p>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.</p>
<h2 style="color: #d0021b; font-size: 2em; line-height: 1.25em; font-weight: bold; margin-top: 1em;">Tapping Into the Warrior Mentality</h2>
<p style="font-size: 1.06667em; line-height: 1.5; margin: 0 0 1.25em;">My life has been characterized by tenacity, perseverance and determination; these values have been instilled in me through overcoming several challenges and obstacles.</p>
<p style="font-size: 1.06667em; line-height: 1.5; margin: 0 0 1.25em;">The role with the utmost significance to me is that of being a patient advocate for people with sickle cell disease. Being born with this illness myself, I felt compelled to be of service in this area. In 2009, I created the online community, sikcell.com, where people affected by sickle cell disease can relate to others who grapple with similar hardships. This platform established an avenue for people across the globe to connect with others who understand their pain, to share experiences that uplift each other, and to inspire in times of desolation. I am always delighted to receive messages on how the site has had a positive impact on the lives of and has inspired members not to give up through their adversities. Although sickle cell tries to prevent me from achieving my goals, through my determination I decided not to be a victim of it. Dealing with the unforeseen pain, hospitalizations and other complications of this condition has played an important role in shaping me into a resilient, resourceful and ambitious individual. This mentality has enabled me to achieve my goals of completing graduate school twice and advancing in my career.</p>
<p style="font-size: 1.06667em; line-height: 1.5; margin: 0 0 1.25em;">My life experiences and perspective have also prepared me to be of value to my community and the society at large. My resolve from overcoming strenuous conditions has been effective in encouraging others through challenging times, such as the current pandemic. Let’s all tap into our warrior mentality to help get us through these unprecedented times together!</p>
<p>Link to full blog: <a href="https://www.onescdvoice.com/blog/tapping-into-the-warrior-mentality/">https://www.onescdvoice.com/blog/tapping-into-the-warrior-mentality/</a></p>
<p><a href="https://twitter.com/sikcell/status/1274071719175696384">https://twitter.com/sikcell/status/1274071719175696384</a></p>
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<p>How are you spending your WSCD day? Please share below!</p>FDA approves voxelotor for sickle cell diseasetag:sikcell.com,2019-11-28:2131823:BlogPost:747652019-11-28T00:01:17.000ZAde Dotunhttps://sikcell.com/profile/ade
<p>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.</p>
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<p>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…</p>
<p>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.</p>
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<p>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 evaluation included change in Hb, percent change in indirect bilirubin and percent reticulocyte count during this time period. In the voxelotor 1,500 mg group, the mean change for Hb, indirect bilirubin, and percent reticulocyte count were 1.14g/dL, ‑29.08%, and -19.93%, respectively. In the placebo group, the mean change during this time period for Hb, indirect bilirubin, and percent reticulocyte count were ‑0.08g/dL, ‑3.16%, and 4.54%, respectively.</p>
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<p>Read the full press release from the FDA here:</p>
<p><a href="https://www.fda.gov/drugs/resources-information-approved-drugs/fda-approves-voxelotor-sickle-cell-disease">https://www.fda.gov/drugs/resources-information-approved-drugs/fda-approves-voxelotor-sickle-cell-disease</a></p>The Sickle Cell Podcast Feat. Adetag:sikcell.com,2019-08-27:2131823:BlogPost:742662019-08-27T01:38:20.000ZAde Dotunhttps://sikcell.com/profile/ade
<p>Checkout sickle cell 101 latest podcast episode with me :)</p>
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<p><a href="https://anchor.fm/thesicklecellpodcast/episodes/Why-Sickle-Cell--Feat--Ade-Adeyokunnu-e52cs5">https://anchor.fm/thesicklecellpodcast/episodes/Why-Sickle-Cell--Feat--Ade-Adeyokunnu-e52cs5</a></p>
<p>Checkout sickle cell 101 latest podcast episode with me :)</p>
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<p><a href="https://anchor.fm/thesicklecellpodcast/episodes/Why-Sickle-Cell--Feat--Ade-Adeyokunnu-e52cs5">https://anchor.fm/thesicklecellpodcast/episodes/Why-Sickle-Cell--Feat--Ade-Adeyokunnu-e52cs5</a></p>Could gene therapy cure sickle cell anemia?tag:sikcell.com,2019-03-19:2131823:BlogPost:726942019-03-19T13:53:41.000ZAde Dotunhttps://sikcell.com/profile/ade
<p>Hey Fam,</p>
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<p>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.</p>
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<p><a href="https://www.cbsnews.com/news/could-gene-therapy-cure-sickle-cell-anemia-60-minutes/">https://www.cbsnews.com/news/could-gene-therapy-cure-sickle-cell-anemia-60-minutes/</a></p>
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<p>Stay…</p>
<p>Hey Fam,</p>
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<p>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.</p>
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<p><a href="https://www.cbsnews.com/news/could-gene-therapy-cure-sickle-cell-anemia-60-minutes/">https://www.cbsnews.com/news/could-gene-therapy-cure-sickle-cell-anemia-60-minutes/</a></p>
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<p>Stay blessed,</p>
<p>Ade</p>Sickle cell awareness month 2018tag:sikcell.com,2018-09-20:2131823:BlogPost:706042018-09-20T15:43:20.000ZAde Dotunhttps://sikcell.com/profile/ade
<p>Please share what you are doing this month in honor of our month of the year!</p>
<p>Please share what you are doing this month in honor of our month of the year!</p>Tools to Increase Public Awareness and Knowledge of Sickle Cell Disease Undergraduate Challengetag:sikcell.com,2015-11-04:2131823:BlogPost:623852015-11-04T15:17:32.000ZAde Dotunhttps://sikcell.com/profile/ade
<p style="margin-bottom: .25em; margin-top: 0;">Hey all,</p>
<p style="margin-bottom: .25em; margin-top: 0;">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 <span class="il">Challenge</span>” and would like to encourage those who are eligible to please …</p>
<p style="margin-bottom: .25em; margin-top: 0;">Hey all,</p>
<p style="margin-bottom: .25em; margin-top: 0;">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 <span class="il">Challenge</span>” and would like to encourage those who are eligible to please partake! The <span class="il">challenge</span> is open to students who are least 18 years of age and currently enrolled as a full-time student pursuing an undergraduate or associates degree. For more information, please check out the link below:</p>
<p style="margin-bottom: .25em; margin-top: 0;"><a href="http://www.nhlbi.nih.gov/news/spotlight/fact-sheet/nhlbis-novel-innovative-tools-increase-public-awareness-and-knowledge-sickle-cell-disease" target="_blank">http://www.nhlbi.nih.gov/news/spotlight/fact-sheet/nhlbis-novel-innovative-tools-increase-public-awareness-and-knowledge-sickle-cell-disease</a></p>
<p style="margin-bottom: .25em; margin-top: 0;">Thanks and have a blessed week!</p>
<p style="margin-bottom: .25em; margin-top: 0;">Ade</p>All Sickle cell trials in the UStag:sikcell.com,2015-02-12:2131823:BlogPost:600562015-02-12T03:06:26.000ZAde Dotunhttps://sikcell.com/profile/ade
<p>New site I found where you can look for trials in your country:…</p>
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<p>New site I found where you can look for trials in your country:</p>
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<p><a href="http://trialreach.com/explore/?lat=38.7791&lng=-76.7794&condition=Anemia%2C+Sickle+Cell&location=&distance=101&country=US&age=&stage=stage_1&phase=phase_1&phase=phase_2&phase=phase_3&phase=phase_4&phase=phase_9999&gender=&sponsor=&free_text=">http://trialreach.com/explore/?lat=38.7791&lng=-76.7794&condition=Anemia%2C+Sickle+Cell&location=&distance=101&country=US&age=&stage=stage_1&phase=phase_1&phase=phase_2&phase=phase_3&phase=phase_4&phase=phase_9999&gender=&sponsor=&free_text=</a></p>Whats your average day like?tag:sikcell.com,2013-05-22:2131823:BlogPost:512992013-05-22T15:42:34.000ZAde Dotunhttps://sikcell.com/profile/ade
<p>Hello all,</p>
<p>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</p>
<p>Hello all,</p>
<p>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</p>Self pity by DH lawrencetag:sikcell.com,2010-11-13:2131823:BlogPost:133282010-11-13T04:30:00.000ZAde Dotunhttps://sikcell.com/profile/ade
<pre><font><font face="MS Sans Serif">I was inspired to post this poem from Alexia's blog post called "no title". This poem helped me out a lot:<br/><br/>I never saw a wild thing<br/>sorry for itself.<br/>A small bird will drop frozen dead from a bough<br/>without ever having felt sorry for itself.<br/></font></font></pre>
<pre><font><font face="MS Sans Serif">I was inspired to post this poem from Alexia's blog post called "no title". This poem helped me out a lot:<br/><br/>I never saw a wild thing<br/>sorry for itself.<br/>A small bird will drop frozen dead from a bough<br/>without ever having felt sorry for itself.<br/></font></font></pre>True Life ---I Have Sickle Celltag:sikcell.com,2009-09-21:2131823:BlogPost:83302009-09-21T23:24:09.000ZAde Dotunhttps://sikcell.com/profile/ade
Hey all, i got this from sickle cell warriors blog, yal should def check her blog<br />
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Hey guys, MTV's True Life is doing a story on " I have a life altering ailment or illness." If you are interested getting our story out there then you need to send an e-mail to seriousillness@mtvn.com. You should include your name, location, phone...etc. Let's make sickle cell known to the folks at MTV~!
Hey all, i got this from sickle cell warriors blog, yal should def check her blog<br />
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Hey guys, MTV's True Life is doing a story on " I have a life altering ailment or illness." If you are interested getting our story out there then you need to send an e-mail to seriousillness@mtvn.com. You should include your name, location, phone...etc. Let's make sickle cell known to the folks at MTV~!