Dr. Broyles Radio Interview

microphoneDr. Broyles was interviewed by radio station KTOK on Easter Sunday April 12, 2009. To listen to the audio, click on the play button.

      Dr._Robert_Broyles

Comments

  1. i want my 8 year old who has “scd” to participate in the trail please contact me at Jemtopaz1@yahoo.com

    • Dear Jeanneie,

      We are not yet at the point when we can recruit patients for a clinical trial. We hope to be at that point a year from now. But, for that to happen, we must find a partner or partners who will help us fund the trials. We ask that all who can donate to this cause to do so this month, September, National Sickle Cell Month, to help us reach this goal. Just click on the gold-colored Donate button on this website, which will allow you to donate with a credt card through PayPal (a very secure site).
      I wish you and your 8-year old the very best.
      Sincerely,
      Robert H. Broyles, PhD
      President, SCCF

  2. Robert H. Broyles, PhD says:

    An answer to Charles’ blog (Sept. 3):
    Charles, you have posted a very fine blog. It is full of very helpful information for sickle cell patients.
    I have only one correction: Our cure is not gene therapy, since we do not transplant any genes or change any genes. Gene therapy is technically very demanding, has yet to be perfected, is very expensive, can only be done in the most advanced medical centers, and is very slow. It is therefore very unlikely that gene therapy will ever be used for more than a fraction of a percent of the world’s sickle cell sufferers, at least in our lifetimes.
    In contrast, our cure, which is called “gene regulation therapy (GRT),” is very inexpensive and easy to deliver. We hope to make it available to more than 80% of the world’s SCD sufferers. GRT works by shutting off the sickle cell gene (not be changing the gene itself) and by turning on another gene (the fetal hemoglobin gene) in its place. When this is accomplished, cells no longer sickle.

    My thanks to all who are reading our website and who have received hope from what you have read here. If you have the means, please donate through this website and do everything you can to help us bring this cure to the clinics.

    Sincerely and with best wishes to all,

    Robert H. Broyles, PhD
    President, SCCF

  3. Dear Sir,
    My name is Anup. I am from India. Even I am a Sicle Cell patient. As you rightly said that Gene therapy is technically very demanding, has yet to be perfected, is very expensive, can only be done in the most advanced medical centers, and is very slow also.

    Sir, I want to establish an NGO in India to help many people like me. As the per capita income is very low in India, I want to know that how much cost is incurred (or will be incurred) in the treatment.

    I would like to spread awareness about the disease and its treatment in India, so that maximum people could be benefitted. I want my life to be purposeful. I would like to evd this mail by a very beautiful quote that i would have ever come accross:

    “The purpose of life is a life of purpose”.

    Thanks and please contact me Sir.

    • Dear Anup,

      I am very glad to hear about your desire to establish an NGO in India to help those with sickle cell. Our treatment, when it becomes available, will be very inexpensive, probably less than $100 US per year, especially if we find the right partners who help us and agree with our business plan for maximum distribution to all people who need it.

      We very much need financial help to make this happen. Please help us spread the word.

      Thank you, and all the best,

      Robert H. Broyles, PhD
      President, SCCF

  4. Dr. Broyles,

    My child is 4 years old and has the “Sickle C or SC” form of Sickle Cell Disease. In all the research that I’ve found regarding the disease, everything seems to be focused on individuals with “SS”. Does your research include finding a cure for individuals with the Sickle C form of the disease?

    Thank you,
    Angela

    • Dear Angela,
      Yes, our cure will work just as well for SC disease. It truly is a universal cure for all forms of sickle cell and beta-thalassemia, as well as sickle beta-thal heterozygotes.

      i wish you and your child the very best.

      Robert H. Broyles, PhD
      President, SCCF

  5. Dr. Broyles,

    Thank you for the feedback on my previous post. I’m very happy to know that the cure will be a universal cure. I’d like to do as much as I can to help bring awareness to the possibility of a cure for this disease. Do you have information that I can send to people that may want to contribute financially? I realize that the month of September is National Sickle Cell Awareness Month. If people make donations after the month of September, will that be too late in helping the foundation reach its financial goal in funding the clinical trials?

    Thank you,
    Angela

  6. Johnson Tosin says:

    Hi broyles,
    Could this be true? i just stumbled at your web page and i got this imformation. I read just a very little on how gene regulation therapy really works on your page, and i hope this helps everyone.
    Its november now, and i just want to know how far your clinical trials have gone. Am writing your from Lagos nigeria. I really feel deep need for the awareness here in Africa too.
    Pls lets know the status.
    Thanks

    Johnson Tosin

    • Dear Johnson Tosin,
      Yes, the finding is true and the data supporting it are strong. The next step is trials in animals, to test for safety and effectiveness of the treatment. Our application for animal trials was very recently approved by our local IACUC (Institutional Animal Care and Use Committee). As soon as the money is raised for these trials and the trials are completed, we hope to begin human clinical trials – which will require even more money. All of this must be done before the treatment can be widely distributed.
      I hope that you will spread the word in Nigeria. We need donations from many, many people all over the world to accomplish the task of testing this cure. Donations can be made with a credit card by clicking on the gold “Donate” button on the website, or by mailing a check to The Sickle Cell Cure Foundation, 601 NW 13th Street, Oklahoma City, OK 73103, U.S.A. All donors receive a personal letter of thanks, a receipt, and recognition on our website.
      Thank you very much for your interest and help!
      Sincerely,
      Robert H. Broyles, Ph.D.
      President, SCCF

  7. Dear Dr.Broyle, I was diagnosed at the age of 5 with sickle-beta-thal (+) in july of 2002 myself & my three sister was exsposed to pavora b19 virus which claimed the life of my baby sister (july12,2002)at the age of 21 & almost took my life,I was told that I was saved by them figuring out what happened to her! As a result of the virus along w/me being on life support from july 11th-21st(the day of her funeral) I’ve developed Avascular Necrosis which has caused me to have both shoulders (total shoulder) replaced also my femur bones,bottom pelvic bones,bone density in my lower back,are deteriating! Yes a whole lot going on! My question is Will this procedure cure the Avascular Necrosis as well! I’m also in process of publishing my biography about my life and my goal in doing so is too bring awareness of this disease b/c a lot of people are ignorant when it comes to it as well as financial help for cures! I’m only 34yrs old & since that fatal day in July 2002 my life has been turned upside down,its been one surgery after the other! I was sick a lot as. Child & it kinda slowed down & before that happen in July 2002 I maybe had 4 episodes that may have lasted 2days in 8yrs! Its been down hill SINCE! There are atleast 4days out of the week that I can barely move!! Its awful & I wouldn’t wish this disease on my worst enemy!!! Thank you for even caring about bringing relief to us! Its so hard maintaining any part of life w/this disease! IT AFFECTS & EFFECTS EVERY PART OF OUR LIVES!!

    • Dear Alondra,
      I am so sorry to hear of the trouble you have had. Our treatment for SCD will stop the anemia and the sickling, so that they do not occur anymore. Any of the effects of sickle cell that the body can reverse are likely to go away, as well. Unforftunately, the damage already done by avascular necrosis that caused all those bone replacements cannot be reversed. We were recently approved to start animal trials. If those go well, we hope that human clinical trials will follow. All these things must be done before a treatment becomes widely available. And all these steps require funding which we are seeking but have not yet found. But, yes, there is hope….
      All the best,
      Robert H. Broyles, Ph.D.
      President, SCCF

    • Hello,

      You should try Osetoking….an herd developed in china to cure your Avascular Necrosis.
      Ive heard many success storys and its helped me as well

  8. Myko Davis says:

    Will this cure be a one time thing or will it be something that has to be administered often?

    • Dear Myko Davis,
      Thank you for your very good question. Our cure will be administered in 3 or 4 rounds each year for the life of the patient, which should then be a normal life with a normal life span. But the treatment is simple to administer, will be painless, and should cause no side effects.
      All the best,
      Robert H. Broyles, PhD
      President, SCCF

  9. Dear Dr, Robert Broyles,
    May God bless you and find you and your family in the best of health and spirit. And in God’s protection.
    I first contacted you in 2008, I had asked about the my daughter taking part in clinical trials at the time . I also asked what can i do in my city to help and you? said raise funds. 1st I’d like to know, is it possible at this time to participate in the trials that are coming up in mid-2012.

    2nd I am in a better position to raise money, as I have a better platform to reach many people. I know, I sound like I have a lot of testicular fortitude, but hey, with faith I believe one can move mountains. I m so pleased and happy to know that you are also moving mountains. may God continue to bless and keep you.

  10. Thanks for ur endeavor,but pls when will the drug be in circulation in Nigeria.

  11. Massy T. Tshiongo says:

    Dear Doctor, I have 2 boys(David 8 and Samuel 7) who both have a severe form of sickle cell disease with stroke and seizure. Right now I am building a non profit organization to raise funds to support research and be able to help children in Africa. We are originally from the Democratic Republic of the Congo and I can tell you that there is no health care down there. This should be interesting for African government since it is affordable.

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