Comments on: Clinical Trials http://sicklecellcurefoundation.org/2009/08/press-release/ a nonprofit corporation working to cure sickle cell disease Sun, 15 Jan 2012 02:14:42 +0000 hourly 1 http://wordpress.org/?v=3.3.1 By: broylesr http://sicklecellcurefoundation.org/2009/08/press-release/comment-page-1/#comment-328 broylesr Tue, 12 Jul 2011 17:21:26 +0000 http://sicklecellcurefoundation.ecoonamoly.com/?p=469#comment-328 Dear Manal, How did the conference go? Sorry that we could not make it - we were already committed to the International BioIron Society World Congress in Vancouver, B.C., Canada, May 22-26, 2011, where we had three presentations that were very well received. I look forward to hearing/reading your report about the Thalassemia/SCD coference in Egypt. Robert H. Broyles, PhD SCCF President/Lead Scientist Dear Manal,
How did the conference go? Sorry that we could not make it – we were already committed to the International BioIron Society World Congress in Vancouver, B.C., Canada, May 22-26, 2011, where we had three presentations that were very well received. I look forward to hearing/reading your report about the Thalassemia/SCD coference in Egypt.
Robert H. Broyles, PhD
SCCF President/Lead Scientist

]]> By: broylesr http://sicklecellcurefoundation.org/2009/08/press-release/comment-page-1/#comment-320 broylesr Tue, 12 Jul 2011 16:31:44 +0000 http://sicklecellcurefoundation.ecoonamoly.com/?p=469#comment-320 Dear Jasmine Lucas, Thank you very much for your letter, the story of your family. I wish the best for you, your husband, and your son. The best help you can give is to tell everyone you know about our website and to tell them that they can donate funds to our effort on the website. Many thanks for your interest, Robert H. Broyles, PhD SCCF President/Lead Scientist Dear Jasmine Lucas,
Thank you very much for your letter, the story of your family. I wish the best for you, your husband, and your son. The best help you can give is to tell everyone you know about our website and to tell them that they can donate funds to our effort on the website. Many thanks for your interest,
Robert H. Broyles, PhD
SCCF President/Lead Scientist

]]> By: Jasmine Lucas http://sicklecellcurefoundation.org/2009/08/press-release/comment-page-1/#comment-274 Jasmine Lucas Mon, 09 May 2011 03:38:54 +0000 http://sicklecellcurefoundation.ecoonamoly.com/?p=469#comment-274 Hi, My name is Jasmine Lucas I dont know if you will personally get this letter but if you do I jsut want to say thank you! I am 23 years old with sickle cell trait I have a son who is 3 years old and has Sickle Cell Disease SS and his father as well. I got pregnant knowing his dad had SS but I did not know I had the trait until it was time to have my son. Over these 4 years I have seen the father of my son in and out of the hopsital almost every other week just from pain and needing mutilple transfusions which has caused iron overload he has so much iron that now he has been told he needs a transfusion but because there is so much iron they are hesitant. My son his name is Derrick he is the best thing that has every happened to me. Thankfully he has not had any major problems yet, he has been hospitalized a few times but only for viral reasons. He has never had a transfusion and looks and acts normal but I know that thie disease does terrible things to someone in a blink of an eye. We live in West Palm Beach Florida I see that you are working on the cure and I would have not known this if it wasnt for google search trying to look up a cure for sickle cell disease. I would do anything to see my family cured. But not just them also the other people I have met through our local Sickle Cell Foundation Events. People who Ive seen are even worse than my family. I will help you anyway I can just give me the tools I need to start. Thank You For Caring God Bless! Jasmine Lucas Hi,

My name is Jasmine Lucas I dont know if you will personally get this letter but if you do I jsut want to say thank you!
I am 23 years old with sickle cell trait I have a son who is 3 years old and has Sickle Cell Disease SS and his father as well.
I got pregnant knowing his dad had SS but I did not know I had the trait until it was time to have my son.
Over these 4 years I have seen the father of my son in and out of the hopsital almost every other week just from pain and needing mutilple transfusions which has caused iron overload he has so much iron that now he has been told he needs a transfusion but because there is so much iron they are hesitant.
My son his name is Derrick he is the best thing that has every happened to me. Thankfully he has not had any major problems yet, he has been hospitalized a few times but only for viral reasons. He has never had a transfusion and looks and acts normal but I know that thie disease does terrible things to someone in a blink of an eye. We live in West Palm Beach Florida I see that you are working on the cure and I would have not known this if it wasnt for google search trying to look up a cure for sickle cell disease. I would do anything to see my family cured. But not just them also the other people I have met through our local Sickle Cell Foundation Events.
People who Ive seen are even worse than my family. I will help you anyway I can just give me the tools I need to start.

Thank You For Caring God Bless!

Jasmine Lucas

]]> By: manal http://sicklecellcurefoundation.org/2009/08/press-release/comment-page-1/#comment-265 manal Sat, 09 Apr 2011 00:47:31 +0000 http://sicklecellcurefoundation.ecoonamoly.com/?p=469#comment-265 Greetings Dr. R. Broyles: Are you interested in attending the International conference for thalassemia and Sickle cell disease in Egypt (4th and 5th of May, 2011) to show your work??? manal Board member of the Egyptian Thalassemia Assosiation (ETA) Greetings Dr. R. Broyles:
Are you interested in attending the International conference for thalassemia and Sickle cell disease in Egypt (4th and 5th of May, 2011) to show your work???
manal

Board member of the Egyptian Thalassemia Assosiation (ETA)

]]> By: broylesr http://sicklecellcurefoundation.org/2009/08/press-release/comment-page-1/#comment-201 broylesr Sun, 02 Jan 2011 23:11:56 +0000 http://sicklecellcurefoundation.ecoonamoly.com/?p=469#comment-201 Dear Brenda, I am sorry to take so long to answer. We are a research foundation; and this is the first year in our 4 1/2-year existance that our research has received significant funding, thanks to the Bill & Melinda Gates Foundation. So, I have been spending most of my time in the lab. Our animal trials in mice got underway November 1, 2010. We hope to start clinical trials in humans with sickle cell within this year (2011). Since we are a research organization and since we as yet have no presence in Uganda, we can only suggest sources of help. You may wish to inquire through these two websites: sicklecellassociationofuganda.org and ugandamission.net. Thank you for your interest, and I wish you the best in finding help for your son. Sincerely, Robert H. Broyles, PhD SCCF President Dear Brenda,

I am sorry to take so long to answer. We are a research foundation; and this is the first year in our 4 1/2-year existance that our research has received significant funding, thanks to the Bill & Melinda Gates Foundation. So, I have been spending most of my time in the lab. Our animal trials in mice got underway November 1, 2010. We hope to start clinical trials in humans with sickle cell within this year (2011). Since we are a research organization and since we as yet have no presence in Uganda, we can only suggest sources of help. You may wish to inquire through these two websites: sicklecellassociationofuganda.org and ugandamission.net. Thank you for your interest, and I wish you the best in finding help for your son.

Sincerely,

Robert H. Broyles, PhD
SCCF President

]]> By: Brenda http://sicklecellcurefoundation.org/2009/08/press-release/comment-page-1/#comment-165 Brenda Fri, 14 May 2010 09:25:44 +0000 http://sicklecellcurefoundation.ecoonamoly.com/?p=469#comment-165 Dear Sir, I live in Uganda and I would like to know if you work with people/communities outside the USA, and if you do would you be interested in helping people living with Sickle cells and the disabilities that come with it? I have an 18 year old cousin Mark Kedi, who used to walk, laugh, play and have lots of friends but since his hip started being eaten up by the sickle cell disease, his always home, lost most or all his friends, because no one can understand what is happening to him, his in and out of hospital, he missed his prom dance for fear of being rejected and alone, this has really affected his self esteem and life at large. Recently his step dad, I chased him away their home, I really can not lie or be 100% sure because he has not said it in my face but am told he said he could not keep up with being in and out of hospital so he started fighting him and accusing him of things he has not done, finally he requested he leave the house and for the past three months his been moving from my place to another cousins place and away from his family, this has even made him worse and very self conscious about everyone and everything. I do not know what kind of help or connections you can give to my cousin, even information on how to get part sponsorship on treatment or counseling, i really do not know am only looking for help, he does not know am writing to you, this is because i do not want him to get false hope, he has been let down too many times. I know he needs a hip transplant since one hip is eaten up and the other has also started giving him trouble, any help will be highly appreciated. I just want him to have a normal youthful life, his waiting to go to University but is not looking forward to it because of his current condition, all his friends and cousins his age are already dating or going out to the movies, parties you name it but Mark is always home 24/7 unless his admitted or we family functions this is not fair. Please help me find away to help him, if you need any further documents from doctors here and any past history treatments am sure I can have his mother avail them and I will send them to you. I know I may not have the clinical words right but am sure if you requested for any information photographs I will avail. Thank You for reading my letter, I look forward to hearing from you and will be crossing my fingers till then. God bless you all for the work your doing Brenda Dear Sir,
I live in Uganda and I would like to know if you work with people/communities outside the USA, and if you do would you be interested in helping people living with Sickle cells and the disabilities that come with it?

I have an 18 year old cousin Mark Kedi, who used to walk, laugh, play and have lots of friends but since his hip started being eaten up by the sickle cell disease, his always home, lost most or all his friends, because no one can understand what is happening to him, his in and out of hospital, he missed his prom dance for fear of being rejected and alone, this has really affected his self esteem and life at large.

Recently his step dad, I chased him away their home, I really can not lie or be 100% sure because he has not said it in my face but am told he said he could not keep up with being in and out of hospital so he started fighting him and accusing him of things he has not done, finally he requested he leave the house and for the past three months his been moving from my place to another cousins place and away from his family, this has even made him worse and very self conscious about everyone and everything.

I do not know what kind of help or connections you can give to my cousin, even information on how to get part sponsorship on treatment or counseling, i really do not know am only looking for help, he does not know am writing to you, this is because i do not want him to get false hope, he has been let down too many times.

I know he needs a hip transplant since one hip is eaten up and the other has also started giving him trouble, any help will be highly appreciated.

I just want him to have a normal youthful life, his waiting to go to University but is not looking forward to it because of his current condition, all his friends and cousins his age are already dating or going out to the movies, parties you name it but Mark is always home 24/7 unless his admitted or we family functions this is not fair.

Please help me find away to help him, if you need any further documents from doctors here and any past history treatments am sure I can have his mother avail them and I will send them to you. I know I may not have the clinical words right but am sure if you requested for any information photographs I will avail.

Thank You for reading my letter, I look forward to hearing from you and will be crossing my fingers till then.

God bless you all for the work your doing

Brenda

]]> By: broylesr http://sicklecellcurefoundation.org/2009/08/press-release/comment-page-1/#comment-112 broylesr Tue, 19 Jan 2010 19:36:53 +0000 http://sicklecellcurefoundation.ecoonamoly.com/?p=469#comment-112 Dear Amang Raymond Kelvin, I am very, very sorry to hear that you lost your sister last year to SCD. But I am glad to hear that you have fetal hemoglobin in your blood. This should help make your SCD less severe AND should enhance the cure, when it becomes available. You, your friends, your family, and all your circle of contacts can help move the cure along faster by being advocates (getting the word out) and by donating frequently (monthly, if possible) to The Sickle Cell Cure Foundation. Please keep in touch and let me know where you are located. All the best to you for 2010, Robert H. Broyles, PhD President, SCCF Dear Amang Raymond Kelvin,
I am very, very sorry to hear that you lost your sister last year to SCD. But I am glad to hear that you have fetal hemoglobin in your blood. This should help make your SCD less severe AND should enhance the cure, when it becomes available. You, your friends, your family, and all your circle of contacts can help move the cure along faster by being advocates (getting the word out) and by donating frequently (monthly, if possible) to The Sickle Cell Cure Foundation. Please keep in touch and let me know where you are located.
All the best to you for 2010,
Robert H. Broyles, PhD
President, SCCF

]]> By: Amang Raymond Kelvin http://sicklecellcurefoundation.org/2009/08/press-release/comment-page-1/#comment-109 Amang Raymond Kelvin Sun, 17 Jan 2010 12:27:00 +0000 http://sicklecellcurefoundation.ecoonamoly.com/?p=469#comment-109 I was born on 23/03/88, I was first diagnosed with SCD in 1992, before then I was never admitted, I have only had three blood transfusions in my lifetime, a genotype test about two years ago confirmed I had fetal haemoglobin, I lost my little sister to the disease last year and I'd love to help your efforts. Please how do I participate in a clinical trial? Thanks. I was born on 23/03/88, I was first diagnosed with SCD in 1992, before then I was never admitted, I have only had three blood transfusions in my lifetime, a genotype test about two years ago confirmed I had fetal haemoglobin, I lost my little sister to the disease last year and I’d love to help your efforts. Please how do I participate in a clinical trial? Thanks.

]]> By: broylesr http://sicklecellcurefoundation.org/2009/08/press-release/comment-page-1/#comment-106 broylesr Wed, 06 Jan 2010 23:20:29 +0000 http://sicklecellcurefoundation.ecoonamoly.com/?p=469#comment-106 Dear magdi, Our cure is still in trials. The amount of time it will take for it to be available depends on our funding. The more funding we get from donations and grants, the faster it will go. Where are you located? How good is your medical care? Please let me know. All the best, Robert H. Broyles, PhD President, SCCF Dear magdi,
Our cure is still in trials. The amount of time it will take for it to be available depends on our funding. The more funding we get from donations and grants, the faster it will go.

Where are you located? How good is your medical care?
Please let me know.

All the best,
Robert H. Broyles, PhD
President, SCCF

]]> By: magdi http://sicklecellcurefoundation.org/2009/08/press-release/comment-page-1/#comment-105 magdi Tue, 05 Jan 2010 06:25:30 +0000 http://sicklecellcurefoundation.ecoonamoly.com/?p=469#comment-105 Hello At the outset I thank you for your tremendous efforts and I hope from the Lord that it Ikavikm Secondly, I am a person with sickle-cell anemia and suffer greatly from this disease has refrained from marriage because I am very afraid that the children come to me have the disease, how can such treatment as soon as possible please help me Thank you very much and gratitude Hello
At the outset I thank you for your tremendous efforts and I hope from the Lord that it Ikavikm
Secondly, I am a person with sickle-cell anemia and suffer greatly from this disease has refrained from marriage because I am very afraid that the children come to me have the disease, how can such treatment as soon as possible please help me

Thank you very much and gratitude

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