Why the #hopeisreal…

Last week, Jenny and I wrapped up our formal fundraising efforts for this year.  Our friend, Jaime Morgenstern, who runs Gilt City events gives us a booth and donates some money to RSRT.  They also donate a bunch of liquor and wine for future Rett Syndrome events.  It’s very generous and we’re grateful she thought of us when the opportunity arose.

But it also reminds me that people like yourself keep donating and don’t necessarily know for what.  I mean, you know that you’re donating to a cause that’s important to us.  You know that Maggie is cute and shouldn’t have to suffer.  You know that a cure is possible.  Maybe that’s enough for you.  Either way and whatever the reason, we’re so immensely grateful for you.

Living in this no man’s land between Rett Syndrome and a cure can make people feel stuck.  It’s hard to push forward because you don’t know whether you have to prepare for Rett Syndrome to get worse, or if the science continues to progress as it has and that sooner, rather than later, Rett Syndrome will be all gone.  But the regular flow of donations and well wishes certainly helps alleviate some of that feeling.

But what good is your money doing?  Where is your money going?  The short answer is your money did some amazing things in 2015 and if you donated through Magnolias Hope every dollar went to research.

Looking a bit closer:

There have been 31 clinical trials for Rett Syndrome according to clinicaltrials.gov, 13 of which are still active or recruiting.

That’s 31 chances for a treatment or cure possible because of your support.

The gene therapy consortium is only half way through its program and results have been encouraging.

There are dozens of grants that have been made for pre-clinical research that someday soon could lead to a clinical trial.

At least two new clinical trials will be starting in 2016 with at least one trial moving into a phase 2.

It is altogether possible that within just a few year’s time, should these trials continue to net fruitful results, a real, viable treatment, will be in our hands and Maggie will start the road to recovery.

It’s also possible that nothing happens.  It’s possible that none of these trials or efforts works out and we have to start over again.  That’s why your support is so important.  That’s why we keep fighting.  It’s not a foregone conclusion that we have already cracked the code, nor is it a foregone conclusion that Maggie will have to deal with this disability for her whole life.  We’re stuck in the middle.  But we won’t be forever.

The progress is real.

The hope is real.

The gratitude for your support through all of this is real.

#bemagnoliashope

 

One thought on “Why the #hopeisreal…

Leave a Reply

Your email address will not be published. Required fields are marked *