Clinical Trials

PRESS RELEASE

No. 01
DATE: APRIL 2, 2009

CONTACT: ROBERT H. BROYLES, PhD
E-MAIL: [escapeemail email=”robert.broyles@sicklecellcurefoundation.org”]
TELEPHONE : 001-405-922-5774

CURE FOR SICKLE CELL DISEASE PATENTED!

U.S. RESEARCH FOUNDATION TO BEGIN CLINICAL TRIALS

Scientists around the globe know that a newborn’s production of fetal red blood cells (HbF) declines soon after birth and transitions to the production of adult red blood cells. Medical researchers have also shown that HbF alleviates the symptoms of sickle cell disease.
Two years ago Dr. Robert H. Broyles demonstrated under controlled laboratory conditions that gene regulation therapy can re-start the body’s production of HbF- even in adults. This discovery could lead to the elimination of the terrible symptoms of this deadly disease inherited by over a thousand children each day.
After establishing the Sickle Cell Cure Foundation, Inc. (SCCF), a non-profit medical research firm, Dr. Broyles is eager to begin clinical trials of the cure that is expected to be more effective and cost far less than standard sickle cell treatments. Twelve countries have already granted patent protection for this break-through discovery. Also, SCCF’s legal counsel recently received a Notice of Allowance from the U.S. Patent Office validating the new cure.
Soon SCCF intends to issue a worldwide request for proposals, aimed especially at non-profits, that would like to partner with SCCF in its conduct of clinical trials. Qualified entities are asked to e-mail their expressions of interest no later than April 12, 2009.

COMMUNIQUE DE PRESSE

No. 1
DATE: le 2 avril 2009

CONTACT: Docteur Robert BROYLES
Message électronique: [escapeemail email=”robert.broyles@sicklecellcurefoundation.org”]
TELEPHONE : 001-405-922-5774

BREVET POUR UNE GUÉRISON CONTRE LA DRÉPANOCYTOSE !

FONDATION AMÉRICAINE PRÊTE À LANCER DES ESSAIS CLINIQUES

Partout dans le monde les chercheurs savent que la production des globules rouges fœtales (HbF) commence à se réduire bientôt après la naissance du nouveau-né en faveur des globules adultes. Egalement les savants en médecine ont démontré maintes fois que les globules rouges infantiles éliminent les symptômes de la drépanocytose.
Il y deux ans le docteur Robert Broyles a démontré sous des conditions contrôlées de laboratoire qu’une nouvelle thérapie de régulation génétique peut commencer de nouveau la production de globules rouges fœtales HbF chez les adultes. Cette découverte pourrait amener à la disparition des symptômes horribles de cette maladie mortelle qui touche plus de mille nouveaux victimes tous les jours.
Après avoir fondé la Sickle Cell Cure Foundation, Inc. (SCCF), une société de recherches médicales à but non-lucratif, le docteur Broyles est prêt à démarrer des essais cliniques de la guérison qu’il s’attend à être plus efficace et nettement moins chère que le traitement drépanocytaire d’aujourd’hui. Douze pays lui ont déjà accordé des brevets pour protéger cette découverte importante. D’Ailleurs, le conseiller légal de la fondation SCCF a récemment reçu une Notification de Permis de la part du bureau américain de brevets (U.S. Patent Office), une étape qui vérifie la validité de la recherche.
Bientôt la SCCF souhaite émettre une demande globale de propositions de partenariat destinée en particulier aux non-lucratifs qui voudraient travailler auprès de la SCCF dans sa conduite des essais cliniques. Tous les partis qualifiés sont priés d’exprimer leur intérêt par message électronique le 12 avril 2009 au plus tard.

Comments

  1. Dr. Broyles,

    I want to assist in any way that I can to help the foundation in its efforts to find a cure for this disease. Finding a cure is very important to me as I have a child that is affected by this disease, and it provides me with some hope that a cure is coming soon. Do you have informational brochures about your research that I pass out to people in my community that may want to donate financially to the foundation?

    Thank you,
    Angela

    • Dear Angela,
      Indeed we do have informational brochures that can be used in fundraising efforts. If you will email me directly (robert-broyles@ouhsc.edu)and tell me what type of effort you envision, I can send you files of appropriate handouts and brochures that you can print. We would appreciate your help very much.
      RHB

  2. Liz Taylor says:

    My family have lived with this sentence for generations. My cousin who is now 28 yrs old is going bling because of this and is has had crisises all through his life. When i think of him my heart hurts. Is there anyway he can be enlisted for this trial. If this changes his life, i can assure you that it would be a miracle in itself. A miracle of hope.

    • Dear Liz,
      Thank you for your message. We are trying very hard to raise money for these trials, and I would hope that your cousin could be part of a trial. Please ask friends and co-workers in your area to support us in this effort. There is hope, and they and you can help make it happen.
      Sincerely,
      Robert H. Broyles, PhD
      President, SCCF

  3. This is very comforting to know that they are finally trying to establish trials for gene therapy using fetal hemoglobin, I am more than convinced that this will work, as my child suffers from SS and I believe his ability to produce this hemoglobin up to age 3 is one of the factors that saved him from some of the many illnesses that accompany this disease for young children. I would also like to know if there is anyway to spread the word and get people involved and donating. Please provide brochures so that we can let every able body we know give to this cause.

    Also on another note, If we have the ability to diagnose sickle cell during pregnancy, which we do, why can’t we make it mandatory that the stem cells from the umbilical cord at birth be used to cure our sick children, why isn’t this a mandate and covered through insurance, the idea is that you can freeze these cords and use them to cure other diseases including sicle cell and that those cord cells are unaffected by whatever ailment you may have. I think that while this may be somewhat of a hot button issue, it would be an appropriate, cost effective, and preventive measure for our children….just a thought.

    • Dear Quiana,
      Thank you for your comments. The approaches of gene therapy and/or a stem cell transplant have the potential to cure sickle cell permanently. But, neither of these procedures has been perfected. Both of these treatments can go wrong and kill the patient. If either or both of these treatments were completely ready for clinical application today, there would still be a major obstacle to their wide-spread use. That obstacle is that gene therapy and stem cell therapy are very, very expensive; and both can be performed only in large, major medical centers. Because of the great expense associated with each of these therapies, 99.99% of the people who need them are unlikely to receive them for many years to come. And banking cord blood is also very expensive, so that this is done only when there is a closely matched person who needs those stem cells.
      Our therapy, called gene regulation therapy (GRT), is different. No genes are altered, as they are in gene therapy. No stem cells are required. GRT is very inexpensive and easy to deliver. With our plan, more than 80% of the people in the world with sickle cell or beta-thalassemia can be treated for the rest of their lives – and lead normal lives – at a cost all can afford. The treatment shuts off the sickle cell gene and activates the fetal hemoglobin gene in its place, which nature has shown us is a “cure.”
      We would very much like to have your help in raising the awareness, support, and money we need to push this cure through clinical trials. Please email me at robert-broyles@ouhsc.edu, and I will send you files from which you can print brochures and other materials you will need to do an effective fundraising campaign.
      Thank you very, very much!
      Sincerely,
      Robert H. Broyles, Ph.D.
      President, SCCF

  4. Greetings Dr. R. Broyles:

    I am a 42 yrs old woman, who’s suffered with SC since I was the age of 2yrs. I was on dialysis for 13yrs. Starting on dialysis the age of 19-21yrs. I now have a kidney transplant, which has been for 9yrs now. I say Thank God. Yes, my life hasn’t been normal in anyway. BUT, I still continue (smile).

    I would like to assist in any way I can to help the foundation with donations thoughout my community, church and the hospital I attend while sick, as well. I’m sure everyone would love to donate. something. Can I receive some of the informational brochures about the research to hand out to everyone I am going to seek donations from. All the information will help a great deal.

    Now about, the cure: I want to help and keep updated with all the results and findings. Good/Bad.

    I would also like to know. Knowing SC has done a great deal to my body as well as being on dialysis for many years., Someone of my age will be able to receive the cure.

    Thank You Dr. Broylesr,
    God Bless You

  5. Ahmed Albosta says:

    Good day Dr. Broyels,

    Could you kindly provide me with brochures related to the medicine. I’ll try to spread it over my country. Are you still short in raising funds. When do you think that you will reach the required figure.

    Many lives could be saved because of this med., I hope the trials will take a part soon.

    Thank you Dr.
    Your efforts are highly appreciated.
    Ahmed Albosta

  6. 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

    • 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

  7. Amang Raymond Kelvin says:

    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.

    • 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

      • Amang Raymond Kelvin says:

        Dear Dr. Robert,
        It is now 2014, I have to say, the past 3 years have been the best in my life. In 2011, I left Nigeria for the UAE. I had to leave Nigeria as my health did not allow me to focus and do well, I started all over and I have been doing quite well. In 3 years, I have only had 3 mild crises and I have been able to focus squarely on my studies. The weather and absence of malaria have been a blessing.

  8. 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 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

  9. 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)

    • 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

  10. Jasmine Lucas says:

    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

    • 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

  11. Hello,
    I’m 33 yrs old and I have sickle cell anemia. I also have two children that have SS. Have you started your trials in humans? How effective were the trials in mice?

    We live in Canada and wanted to know if we can be considered for the trials?
    Thank you for your amazing work!

    God Bless!

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