Plan to cure Sickle Cell Disease
Plan to Cure or Ameliorate Sickle Cell Disease (SCD), Parkinson’s Disease (PD), and other diseases by Gene Regulation Therapy and Iron Management
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What stage is it now?
Dear Frank,
We are at the stage of raising money for the first animal trials (Stage 4, in the red box, on our diagram of a Plan to Cure Sickle Cell Disease) and also, at the same time, raising money for the clinical trials that will follow soon thereafter. Please help spread the word, and ask as many as possible to donate to our non-profit effort to get this cure tested and available to all.
Thanks.
Robert H. Broyles, Ph.D.
President, SCCF
Hello Frank,
This is to register my appreciation and commend your lofty works in combating sickle cell anaemia. A quick question for you. What is the difference between AS and AC genotype? Does AC genotype exist? And what are the chances if AS and AC carriers marry?
Dr. Broyles,
This is great work that you have accomplished, thank you! From my understanding, you are currently in Stage 4, trials in animals. i see that it states in the diagram that $1,600,000 is needed and an additional $17.3M is needed for the clinical trials. My question is how much of these amounts has already been raised? Or to word it differently, how much more is needed at this point?
Thanks
Dear Terra,
Thank you so much for caring about this enough to ask these important questions. In terms of funding, we are still at the beginning. We have enough funds now for the first 60-day animal trial which has been approved by our Institutional Animal Care and Use Committtee (IACUC) and will begin in January or February, 2010. After that, if all goes well, we will do another more extensive and more expensive animal trial that will include transgenic mice that are models for human sickle cell disease. Those funds must still be raised; we estimate that we need $60,000 to complete the most important experiments in that animal trial. So, what I am saying to you is that raising these funds can and will be done in stages; and with each success, we will start and finish part of the trials. Progress will continue in parallel with the fundraising. So, within Stage 4 there are individual steps that will be done as we get part of the funding. We never stop working, even when the balance in our account is very low. I hope this explanation helps everyone understand why we are always requesting donations. We also want everyone to know that every dollar helps, that all of our staff are volunteers and are are not paid salaries, and that as much of our funding as possible goes directly for the trials that will advance the cure. We send a personal letter of thanks to each donor with a receipt that states how the donation is being used. Our U.S. IRS Form 990 that reveals our financial accounting as a nonprofit research foundation will soon be posted on this website.
Please ask as many people as you can to donate frequently. Thank you so much. We appreciate all of you who are with us in this great cause.
Sincerely.
Robert H. Broyles, PhD
President, SCCF
Hello Dr. Broyles,
I would like to understand how long the process of finding a cure and making it official will take once you recieve the funds you need AND Where can I donate money to? This is a very serious matter and I would like to be of help in any ways that I can.
Thanks for you hard work in finding answers for the people!
Precious
Dr. Broyles,
As I look more into innovative ways to raise money for your efforts, i have an observation that i wanted to share with you and then ask you your thoughts about it. Just by me googling the words ‘Sickle Cell Foundations’, there thousands upon thousands of nonprofit organizations throughout the United States and abroad that either are supporting those with sickle cell or trying to find a ‘cure’ for sickle cell, or putting forth some type of effort to help patients and families. But the common theme for all of these foundations is asking people to donate money for their efforts. I believe that all of these organizations have a desire to find a cure for the sickle cell disease, so that thousands of people throughout the world can live normal lives.
Being that you are confindent that you have acutally found a ‘cure’ for sickle cell using Gene Regulation Therapy, I find it very unusual that other foundations are not rallying around your efforts to see that the necessary funding is being raised to get through these animal trials and clinical trials to ultimately get this cure out to those who need it!
So i’m wondering are other foundations aware of your efforts and if so, are they pouring in funds to see these trials funded expeditiously. And if not, what reasons do you think are keeping other foundations from helping in your efforts? It seems to me that between all of these thousands of sickle cell foundations, that the money raised collectively would be in the billions. Do you think it’s feasible that somehow there can be a mechanism to rally as many foundations together to support getting your cure out faster? Or am i just being naive…
Thanks,
Terra
Dear Terra,
Yes, there are many sickle cell foundations – but probably less that 200. When I googled the same term as you, I got 595,000 hits; but only 712 were not repeats (according to Google) and, of those, I counted 194 that are foundations, limited-time fund drives, or for-profit companies. The SCCF is the ONLY foundation doing research on a cure and the only organization that has a potential cure that can be delivered anywhere in the world at low cost that all can afford! All the rest are nonprofits dedicated to educational information, support groups, or supporting families with SCD in their local areas. The only foundation that links to the SCCF website is the Cure Sickle Cell Foundation of Jackson, Mississippi, which has the clickable link to SCCF titled
Terra, there is something you can do to help this situation. (SCCF has a small volunteer staff that is already overwhelmed.) You could email each of these other foundations and point out that they should be linking to our website and, when possible, sending donations to the SCCF. Please email me at robert.broyles@sicklecellcurefoundation.org and let me know whether this is volunteer work that you can o for us.
Many thanks!
Robert H. Broyles, PhD
President, SCCF
Dear Precious,
The process will take at least three years from now, even if we get all the funding we need. It will probably be longer than three years in the U.S.A. since FDA approval can sometimes be an arduous process. The approval process may be faster in some other countries. Funding is the critical factor, including hiring more people to do the necessary work.
Donations by checks payable to the SCCF may be mailed to:
The Sickle Cell Cure Foundation, Inc.
601 NW 13th Street
Oklahoma City, OK 73103
Those who visit our website (http://sicklecellcurefoundation.org) can donate using a creditcard through the secure PayPal sight by clicking on the gold “donate” button in the right-hand column of the webpage.
All donations are 100% tax-deductible on the U.S. income tax forms.
Thanks very much, Precious!
All the best,
RobertH. Broyles, PhD
President, SCCF
My question is when the cure comes into reality, will it be in the form of a drug or a petient needs to undergo surgery
Dear Kevin,
The cure will be in the form of a drug; no surgery will be necessary unless there is damage that has accumlated in the years before this treatment is begun. The first form in which the treatment will be delivered is by a series of small injections which will have to be repeated three or for times each year, we predict. As research progresses, we hope to have a pill that can be taken as needed.
Best wishes,
Robert H. Broyles, PhD
President, SCCF
Dr. Boyles,
There have been other cures for sickle in young children. Please, can you detail to me if this cure will work in adults and are there any points where the cure would not work?
Thanks,
Ray
Just thought of another question. So a person with SCD takes the necessary drugs yearly as required and everything is going great, and they have no issues with the disease at all…my question is when that person wants to have children, will the child still be at risk of inheriting SCD from their parent who is undergoing this Gene Regulation Therapy treatment?
Thanks,
Terra
Dear sickle cell community,
My name is Larry Nixon, MD & co-founder of Cure Sickle Cell Foundation, Jackson, MS. My wife, Dee Bookert-Nixon, RN, & I have a child with SCD who serves as the motivation to our cause. When I discovered what you guys were doing, I was really excited. After I read & did my due diligence with review of literature, I now feel spiritually committed to make sure that this project is a complete success.
We started http://www.curesicklecell.org as just a site to promote research aimed at a cure because we felt there was not enough discussion in this regard. At this time I was a resident at Emory University. We moved to Mississippi and the community immediately accepted our foundation with open arms. I primary goal is to promote efforts aimed at curing SCD, but because of a lack thereof we got involved in other community activities (health imformation, educations for care-providers etc.) Needless to say we as a family & foundation are excited about your work and will be meeting with our board to see how we can support you financially. Our niche as a foundation is community relations & we have been waiting for an opportunity to organize so that we can take a cure to the national stage for financial support. We sincerely want to get involved
Dear Dr. Nixon,
Thank you very, very much for your Comment and, especially, for your support. We have been aware of your foundation’s interest and support of our endeavor for some time, as you have a link on your Cure Sickle Cell website directly to our Sickle CellCure Foundation website. There are not enough thanks in this world to express the depth of our appreciation for this link and acknowledgement. Of all the sickle cell websites out there, yours is the only one that has provided such a link. And thank you for considering financial support from your foundation for our effort to get this cure into clinical trials. That is wonderful and much needed. This year, we are trying to get our most earnest supporters to consider making a donation each month, on a regular basis, which will help us keep our effort constant and continuous. We would very much welcome your partnership in this endeavor. We look forward to hearing more from you and your fine group. Many thanks!
Sincerely,
Robert H. Broyles, Ph.D.
President
The Sickle Cell Cure Foundation
Dear Terra,
Thanks for your excellent question. The answer is “yes, depending on the genetics.” Let me explain. Since our treatment does not alter the genes in any way, the same inheritance rules will still apply. So, if one parent has SCD (two sickle genes) and the other parent has none, all the children will have sickle trait (one sickle gene) and NOT have SCD. If the second parent has trait (one sickle gene), then each child has a 50:50 chance of having SCD and a 50:50 chance of having trait. And finally, if both parents are SCD (both genes sickle), then all children they have will have SCD. But the good news is that those children could be started on our treatment before the SCD has an opportunity to express itself, and lead a normal life. That is what we are aiming for and hope will be confirmed by our animal and clinical trials.
All the best,
Robert H. Broyles, Ph.D.
President
SCCF
Dear Ray,
Yes, this treatment is expected to work in adults at any life stage, as well as children. Clinical trials should allow us to determine ranges and frequency of doses, and whether all people respond equally or whether some need a higher dose, etc. But, as with all treatments that have been proposed for SCD including stem cell transplants and gene therapy, the treatment does not reverse previous damage caused by SCD. So, if taken late in life, we hope that the treatment will still stop sickle cell at that point. But other medical measures may be necessary to try to repair previous damages, depending on how severe the damages are.
All the best,
Robert H. Broyles, Ph.D.
President
SCCF
Dear Dr Broylesr, You are really doing a wonderful work, may God continue to strengthen you. Please what is the level of development? I hope things are going on well? Thank you and God bless.
Dr. Broyles,
How are you? i hope all is well! Have you heard anything back from the Bill & Melinda Gates Foundation about the pending grant?
Terra
Dear Ebuka Ugwu,
The level of development of our cure: We are currently conducting animal trials to confirm safety and confirm that the cure works inside a living animal. These trials will continue through April of 2011. In 2011, we hope to start clinical trials in several countries with humans with SCD, and I hope that the first trials will be in African countries. Where are you living?
All the best,
Robert H. Broyles, Ph.D.
President, SCCF
Dear Terra,
We hope to have news about the Bill & Melinda Gates Foundation application soon. Check our webpage after May 1st.
Thanks for your support, very much.
Sincerely,
Robert H. Broyles, PhD
President, SCCF
Dear Dr Broyles
God bless you and your team for all the wonderful work you are doing to help people with sickle cell disease live a normal life. You can not imagine the expectation and hope of families wih SCD children in this cure to be available as soon as possible. My 6 years old daughter has sickle cell SC and always has painful crisis since she was 9 months. She lives in Togo, West Africa and i pray God in the name of all these children that are suffering in Africa and all over the world from this disease to assist you in all the ways to get this cure. I will make my small part of contribution.
By the way do you have a partner in Togo, West Africa? Also I believe our African governments should contribute toward this effort since most people with the disease are african living in Africa and it’s been proven that the disease slow the economic growth of the continent. I will try to send letters to some of them and direct them to your website to see if they will be willing to participate in this effort. Thank you very much for your effort. God bless you and have mercy on suffering children
Daniel
New York