Thursday, October 16, 2014

Why does it matter who finds the cure?

When we shared our news about Cammy getting accepted into the IGF-1 clinical trial, we received an overwhelming amount of love and support (check out all the likes, shares and comments). The decision to submit an application to this trial was not taken lightly. We did our research, crunched our numbers, discussed it thoroughly as a family about what we were willing to give and do to make this happen. Cammy is the human side of research and so are all the other girls participating this in trial or the others. We have been eternally grateful of all the love and support we have received throughout this Rett journey.
Our hearts broke when a new member of the IGF-1 family received a disturbing phone call after she shared her family's brave story on the news also reporting that her daughter will be in the IGF-1 clinical trial. We are so proud of our friend of recording the conversation, being so brave and wicked smart and sharing the facts. Please take a moment to read her post....
I have never been a person who favored one particular group over another. To be quite frank I don't really give a shit who fixes it, just as long as they fix it.
I was contacted and then had a conversation that I feel obligated to share as the outcome of the behavior impacts us all.
I am taking Emma to participate in the IGF-1 clinical trial on Friday and someone contacted me to try and convince me NOT to participate. I was taken aback by this as it was another Rett mom and a person that has the ability to influence others. The more shocking thing is that her information is not correct or is exaggerated in an effort to instill fear in the listener.
I have a doctorate in clinical psychology and had to do a original research study that advanced the field in order to obtain my degree that passed the IRB for my dissertation. I was the TA for my doctoral level research methods professor in the 3rd year of graduate school so the world of research it not unknown to me.
In the conversation that I had I was told that
* the currently published results on the IGF-1 study do not show great results with the symptoms of Rett.
This is true, because that was not the goal or the hypothesis of the paper that was published. Phase one of the trial was seeking to show that IGF-1 was well tolerated and safe in our girls. In a peer reviewed paper you don't answer questions that were not asked.
*The IRB rejected the study several times. Probably not the first time or that last time. At the end of the day they accepted the study and they deemed it an ethically sound study that goes to the greatest extent possible to obtain informed consent and protects their human subject from harm. This is an especially rigorous process when children are involved. What more, I do not think IRSF has ever been anything other than open about them seeking out a more qualified individual to run this study and it being rewritten by that doctor.
*Your daughter won't be able to participate in future "better" studies because she participated in IGF-1.
All studies have exclusionary criteria. IGF-1 has several including age, puberty, degree of curve and so on. Is it completely beyond the realm of possibility that you might be excluded, no. Is this fact being exaggerated to the point of hyperbole, yes.
Any number of things can exclude you from a future study. Participating in this study is unlikely to exclude you from something that will happens 3, 5 or 10 years from now.
* My personal favorite: Participating in this study will cause us to run out of girls to use in future research.
Unfortunately another girl is born ever 90 minutes. Don't worry, you'll have your girls.
* There are other trials going on besides this one.
I sure hope so, let's not put all out eggs in one basket. I have donated to all of them so they better be doing something.
* it was implied that the study is bias because the person running the trial has some stake in IGF-1.
I have not had the time to investigate the validity of this claim as of yet. However, a person from the Cancer Treatment Centers of America has ties to the chemotherapy... I'd still get treatment if I found out I had cancer tomorrow. Just sayin', the shit works.
* your only calling out of a deep concern for my family.
We are not even friend on facebook, you do not call me and only have spoken to me briefly.
* don't tell anyone you talked to me because it would look bad and you have only told me and one other person.
It does. I doubt that.
I do not know the motivation of the person who called, nor do I really care and it is not important who it was. I do care that misinformation is being spread and that I cannot tolerate that.
Since this brave mom shared this information, another IGF-1 mom reported that the same person contacted her telling her that her daughter might get cancer from IGF-1. We are so nervous more families were contacted.
When we began Cammy Can, it was not only about spreading Rett awareness, but also an anti-bully campaign. Using your high status in 2 major Rett organizations to discourage people from participating (with incorrect information) is bullying. This will not be tolerated from our family.
Support who you want to support, but always do your research. Know exactly where your money goes and who is in charge of that money. has a FOUR STAR CHARITY NAVIGATOR rating.
Thank you to everyone who has supported us and donated to, backing this trial. These leaders make us proud.
And thank you to our friends and family who have since unliked pages in support us and our anti-bullying campaign.
Emma, we are thrilled you are part of our IGF-1 family. You are going to rock this trial!

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