When you live in the disability community like we do, you meet a wide variety of people. Different diagnoses, different experiences, different perspectives on life. And, yes, different interactions with the same people. Ask five different people their thoughts on a particular doctor, clinic, or charity, and you’ll get a dozen different answers. Yes, I said that right. Five people with a dozen different answers. Because sometimes those answers change over time, or sometimes the individual is conflicted and has had varied experiences with the same entity.
Something has happened recently within the Rett Syndrome community. There’s been a divide. A blog post came out, which was written by a Rett parent, that brings into question the reliability and honesty of a very well-known Rett Syndrome charity. Some would say the most well-known Rett charity. Because they’re the primary fund for research, they receive the most donations. So bringing into question their trustworthiness is big. Really big.
We (in the Rett community) are updated periodically about new discoveries, clinical trials, and general good news about the search for a cure. When I say cure, the hope and goal is to be able to fix the DNA, restoring it to how it should be without the Rett mutations. The reality of the clinical trials, however, is that they are testing drugs which are meant to decrease the symptoms enough to increase the quality of life for individuals with Rett. So there are two different end-games here. The clinical trials are basically buying time until the cure is found. Whether the cure is even possible remains to be seen, so many prefer to put their money on the clinical trials for symptom-suppressing drugs, rather than the pipe dream of a cure.
Parents whose children have a disability are indeed desperate, but some are naturally more cautious and cynical than others. I have one friend in particular who has become disenchanted after 20-something years of caring for her son with a severe disability. When she first got the diagnosis, it was easy to get on board with the primary charity organization, and they promised a cure in five years, ten years… They kept making new promises, all the while raking in lots and lots of money for research, and the parents never receiving a dime for assistance in daily living, or receiving any real support at all. The more she spoke with other parents, the more she heard about the charity being rude to them, dismissing them, or being painfully honest by saying that there would never be a cure for their particular variety of this disability. Thus, her trust was broken, and she is vehement about now warning others not only about that specific charity, but she also warned me when I was new to the Rett diagnosis, to not put too much stock in promises for a cure, and to not trust the larger organizations.
There’s a lot of money to be had in charity work. And the con is simple. Hang out that carrot of a cure in front of desperate parents and let them do all your fundraising for you. Sounds simple, right?
Well, it’s not that simple. You see, many of these organizations, and–to my knowledge–all of the Rett organizations, are run by parents of children who have that disability. So they have a vested interest in actually obtaining a cure, or at least some good drugs to help with symptoms, and aren’t going to solely be in it for the money. Could someone be so hard-hearted as to use their child as a prop and make lots of money? Of course that’s a possibility, but I would say that is less likely. It would be more likely for the group of scientists and researchers to be using the parents to keep their work funded, putting pressure on the charity organizations to get more funding, all the while knowing there would never be a true cure. That’s also a possibility.
Another wrench in this narrative is that there are families in clinical trials who have seen good results. Not perfect, not a cure, but improvements. And we know at least some of the money is going towards those trials. So for that, it would be worth continuing to support them, wouldn’t it?
The other thing to consider is that these organizations DO receive federal money to support their research. Parent-raised funds are tiny compared to the millions (billions?) given by much larger entities. So what would be the drive or purpose in exerting so much effort into taking advantage of parents if they are already receiving so much more from the government? It wouldn’t make sense for them to be desperate enough to hamper Rett parents for money if what parents contribute is almost negligible when looking at the whole of their budget. Wouldn’t be worth their time.
Yet at the same time, some parents have reported that representatives of these organizations are rude to them (and unfortunately I’ve seen this online for myself), that there have been whispers of “There will never be a cure…”, and there is the fact that these organizations continue to target Rett families as their fundraisers instead of contacting supermarkets, coffee shops, and the like for cross-community fundraising like so many other charities do.
It doesn’t make sense either way. And as a Rett parent, it leaves me feeling uncertain. Do we continue to support these organizations? Do we trust them? Do we push back and demand changes from them? Or do we sit back, confused, and try to stay out of the fray?
Personally, that last one sounds the most desirable. Then again, I avoid confrontation as much as possible and hate to be caught in the middle of things when there isn’t a clear answer present. And yet I’m writing this blog, bringing up these questions, and presenting this information to others. I suppose it’s a matter of making others aware. Like I say in my birth work, it’s about informed consent. It’s not always about who is right or wrong, but about the individual having all available information presented to them, and being empowered to make their own decisions confidently. That’s what this is about, I suppose. Giving my friends and family, who I know for a fact have donated their hard-earned money towards this organization, the chance to come to their own conclusions. The chance to do research on their own, look into the different charities available, and make their own decisions as to whether or not they will donate. Whether I will continue to promote them remains to be seen. This is still a new conflict, and where it leads is anyone’s guess at this point.
All I know is that my daughter has been made captive by Rett Syndrome, and as her parent, I would do anything within my power to free her of that prison. That, I think, is what we all have in common, whether we are just “normal” Rett parents, or whether we are the founders and trustees of large charity organizations. We would do anything to give our children a better life…