Interview with the YBRP president, Trish Flanagan
What MUNCH is doing for us comes as an enormous relief.
As many of the MUNCH community know, the Yellow Brick Road Project was the first community-selected project to receive MUNCH donations.
Going live two weeks ago, the transaction fees donated have helped The Yellow Brick Road Project make a significant step forward to their first funding goal to pay the last step of their initial research project commission.
But there is still a long road to go. As The Yellow Brick Road Project will be included in the community charity selection as the incumbent winner, we spoke with founder and parent Trish Flanagan to understand what lies ahead for the project and how our continued support could be used.
Can you introduce yourself and your role at the Yellow Brick Road Project?
I’m Trish Flanagan, President of the YBRP and I’m mom to Morgan, who’s 9 years old and who was diagnosed with a very rare genetic condition — for which very little was known.
In 2017, we met with a neurologist and geneticist in New York who seemed to give some hope in a very hopeless situation.
There were three other families and we all decided to roll up our sleeves and do something rather than sitting on the sidelines. Later that year, The Yellow Brick Road Project was born and we haven’t looked back since.
What is the mission behind the Yellow Brick Road project?
The Yellow Brick Road Project has three main mission goals:
First we want to raise awareness. We are so small, we need people to know that this is something to pay attention to. Because a difference can be made.
We also want to connect as many families as we can, we want to provide resources to them, help them get involved in research, and help them understand that there is reason to have hope. A treatment may come that will really change the forecast of their child’s life.
Lastly, and maybe the most important is that the YBRP doesn’t want to just wait around for researchers to become interested in studying HNRNPH2. We want to be a part of driving the research forward and raise funds furiously in order to do that.
Our children are affected globally. They struggle in every area of development. No one with this condition lives completely independently, without help. Our goal is to change that. We aim for a therapeutic treatment has an impact from the inside out.
We’ve been starting to feel a lot of pressure. Our lives are really chock-full of really tough stuff with our kids, so trying to fundraise with a hard stop, makes you feel worried. There’s so much more work to do, but it feels like a burden has been lifted.
This year, you have a very specific funding goal — can you explain the reasons behind this?
In 2020, the YBRP awarded its first research grant, which was a really big deal for us! We started fundraising in 2017 and we finally felt like we had enough to launch some research that we could say we were responsible for. It was exciting but also scary at the same time.
There are three installments for payment of $420,000, we have already provided the first two, but the last is due in July. We feel like MUNCH came just when we needed them most!
We’re working hard to fundraise but the time constraint created a lot of pressure. We don’t want this research to end so what MUNCH is doing for us comes as an enormous relief.
After this goal is met, what will further donations be used for?
I really think it’s important for the MUNCH community to know that meeting this deadline, sending off the final payment, certainly won’t lead to the treatment, or a ‘magic pill’.
This is one leg, one part in a very long journey. Greater resources will have such a great impact on the speed and depth of the research that we can drive forward. We can add manpower, getting more experienced scientists, more hands on deck.
We can support investigators to begin performing some preclinical trials. Making sure the promising treatments that they are identifying are safe. There are tests of efficacy and toxicity that are very important.
Here you can see an example of a standard process cycle that new treatments have to undergo. Image thanks to CombinedBrain a consortium led by patient advocacy foundations.
People just don’t look our way because we’re so small. I think of us like a little rowboat we put in the water a few years, we’ve been struggling struggling struggling to get into deeper water.
How did you first learn about the MUNCH project?
We have a small community. Families connected to YBRP are fewer than 100 and we are all dotted all over the world.
There’s one family that have been standouts when it comes to picking up the torch and raising awareness and funds — this is Luis and Andreia from Portugal. They were in touch with me and he mentioned that he may know of an opportunity to be part of MUNCH through a common connection with Rafael, one of the founders of MUNCH. Rafael said, ‘I can’t make promises, but let’s connect you’.
After some meetings with your team, it was decided that we could be one of the options for the community to vote on. The MUNCH community voted and here we are!
We’ve been starting to feel a lot of pressure. Our lives are really chock-full of really tough stuff with our kids, so trying to fundraise with time constraints is like being in a pressure cooker! There’s so much more work to do, but it feels like a burden has been lifted.
Did you have any experience with cryptocurrencies and blockchain projects before this?
Very little! There was a parent of a child with HNRNPH2 who reached out to us from China. He said, ‘Do you guys have any way to accept cryptocurrency?’
I remember going to another board member and saying ‘Do you even know what cryptocurrency is??’ He did, but at that time, we weren’t even set up with a crypto wallet.
So, that was the only previous knowledge I’d had. So really, before MUNCH, it was all new to me.
What advice would you give to other charities considering implementing a crypto-based donation model?
I would advise them to set up a cryptocurrency wallet!
Don’t wait, it can take a little bit of time to get set up, but absolutely investigate this avenue, charitable crypto companies are out there so it could be very meaningful for raising funds for really important work.
I wanna see other groups like ours succeed, too. I’ll definitely be recommending that they get set up and ready to receive donations.
It’s a game-changer. Otherwise, people just don’t look our way because we’re so small. I think of us like little rowboats we put in the water a few years, we’ve been struggling struggling struggling to get into deeper water, but this is like adding a motor to the boat and jetting forward!
The next steps for The Yellow Brick Road Project
The truth is, even after the initial funding goal is met, there is still a long way to go. Research projects take years, if not decades and the small disease community relies on the community for funding.
Through continued support, the MUNCH community can make a difference to the lives of the people living with this disorder, and keep active research happening into an eventual cure.
If you want to express your support for the Yellow Brick Road Project, you can cast your vote here.
Learn more about them on
CALL FOR HELP — Yellow Brick Road Project — YouTube
YBRP and the Quest to a Cure — YouTube
