Getting Involved in the Fight Against DIPG and DMG | The Cure Starts Now Getting Involved in the Fight Against DIPG and DMG | The Cure Starts Now thecurestartsnow.org

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Getting Involved in the Fight Against DIPG and DMG

Want to talk today a little bit about getting involved. Not a day goes by that we don't get an email from a parent or a patient, and they want to know what they can do to help out with DIPG and DMG causes. There’re many ways that people can get involved, but I wanted to talk about a few of them here today. So that in the hopes that more people can get involved in this fight, more people can help us win this fight and more people can join us in this collaborative effort. Because it's really going to take all of us to try to make a difference within DIPG and DMG.

Step 1: Become an Advocate

The first thing that you could do, is you can become an advocate. But let's be honest, a lot of the knowledge about DIPG and DMG is already out there. Obviously, there's been children from my daughter, Elena Desserich, to Lauren Hill, to Gabriella Miller, to Chad Carr. Each one of these children have been prominent, they've touched millions of folks in many different countries and their stories have gone all over the place. And that's helpful because people have some knowledge of it, but just like with any other type of cancer, breast cancer, lung cancer, etc. We're pretty much aware of it. So what we have to do is we have to emphasize why it matters. That's really what an advocate's role needs to be as we move into the next 10 year period of time.

When we talk about being an advocate, we need to talk about things such as the homerun potential. We do believe that within DIPG, it's going to teach us, and DMG. It's going to teach us new ways to focus on other types of cancers. And so with that, we believe that we're going to possibly find ways to be able to cure all forms of cancer through the techniques that we learn from. This is called the homerun strategy. It's something that actually was with The Cure Starts Now from the very beginning. That's actually, the reason why we're named The Cure Starts Now, because we proposed this homerun idea in our book, Notes Left Behind. And the last line of it, it said, "The cure starts now." So, the more that we can get that out, I think that'll help. What that's going to do, is tell people why DIPG and DMG matter to them. Even if their own child, or even if they are not personally affected by it.

Step 2: Talk About Resources

The second thing an advocate can do is can talk about resources. There are plenty of resources out there. And one of them is informational resources. There's websites, such as DIPG.org, which is the biggest website you're going to find out there for DIPG informationals. To get that information into the hands of parents that are in the fight today, I think is a really, really good idea. Because, as you guys know, on Facebook and through all the various other groups, a lot of misinformation can happen. So we want to make sure that they have the most up to date information possible.

The other way an advocate can get involved with helping to put out resources, is to talk about tools such as the DIPG Registry. Which allows parents a free second opinion and allows a central review of their MRIs. And best of all, it's not just a database of brain cancers or frankly, just any cancers. It is a registry about DIPG and DMGs. It's specific to what we're looking at so that we can detect patterns of both of these to try to derive the focus on research further.

Step 3: Raise Money for Research

Beyond advocacy though, there's lots of other ways. Because at the very end of this and with all the work that we're doing with it, this is not just about advocacy. It is also about raising money. And we do have to raise money to be able to fund research. Perfect example is what we're going through right now, where we just don't have enough money to be able to fund the trials. And so you see a lot of foundations that are closing down their grant cycles are not funding anything at all. Well, the reality is, is the cancer doesn't stop and neither should we. So it does come down to raising money in addition to just talking about it. That's really what The Cure Starts Now, what our DIPG collaborative partners have focused on, is the idea of really trying to raise money so that we can give the tools to the researchers so that they can help us cure it.

Start a Fundraiser

There's a couple of ways that people can get involved in this. One of those is they can go ahead and they can start an event. This is kind of a simplified version of it. These are for people who want to be able to help out with one specific thing in a year. They may not want to do this on a weekly basis. They may just want to go ahead and do a fun run, or they may want to go ahead and have a gala. It may be even named after their own child. What that does, is that helps to provide a little bit of a tribute to the inspiration that they left behind, but it also gets people something that they can do to try to help out. Because communities love to help out people that are in the fight, parents in the fight, children in the fight. So, this is an outlet that allows everybody to really get involved. It's simple. It's just a matter of come up with what you enjoy, what maybe some of your friends enjoy and then put on an event. And then donate the proceeds of that to a good charity that's going to invest in DIPG or DMG research.

The second thing that a person can get involved with is they can go out and they can start a foundation. This isn't for everyone. Starting a foundation requires some very strong expertise in legal matters, in accounting. Also just frankly, a little bit of an entrepreneurial spirit. Folks that want us to go out and start a foundation should have very strong contacts with attorneys, very strong contacts with accountants. And should be prepared to really invest about 20 hours a week in the creation of it. In addition, when you go out and you start a foundation, there's some things that you got to invest in. There's really nobody that's going to give you that money, short of yourselves. So starting a foundation, you really got to look at it and say, are you willing yourself to go ahead and invest at least $10,000 into that? The reality is a lot of parents coming out of this fight, typically don't have those types of resources. It makes it tough, both from a time and also in expertise. And frankly, also a money perspective to start a foundation.

Regardless of that, if you have all those skills and that's something that you want to do, I would suggest looking around. I know that when we got into this, we looked around to try to find another foundation that was doing something along the lines of the homerun strategy, was focusing on research and was kind of doing it in the name of all children. Why? Because we know this. My wife and I, Brooke, actually are business owners.

We're entrepreneurs by trade. And so we, frankly, didn't want to start something new. We knew the challenges that came into that. But, unfortunately, we couldn't find that. So that's why we said, "All right, I guess we've got to do this."

If you find a foundation that you already know of, that you're already aligned with, that you already share goals with, I would suggest partnering with them. It makes it a lot easier on everybody. And frankly, you may even find out that that foundation is very happy to have your help in the process as well.

Step 4: Become Part of a Foundation

The next thing that you can do is you can be part of another foundation. That's kind of what I alluded to in the last one, but this is going to get a little bit more in depth. Within The Cure Starts Now, we have chapters. We have 40 plus chapters, and they're all over the entire world. We have one in Canada and Australia, and then the great majority of them here in the United States.

These are families that looked at it and said, "You know what? I don't really have enough time, enough investment that I want to make into creating my own foundation.

That's a little bit much for me. I align with the interest and the need to fund homerun research, and have a kind of a long-term strategy. With what The Cure Starts Now is doing. I'm going to do something a little bit more than just one event per year." What they did is they went ahead and started a chapter. And that's a little easier.

Certainly, you have a little bit of work to do in your area. We do ask that some of our chapters come up with maybe two events per year. It could be a eating out thing at a local restaurant, all the way to a giant gala. Or it could be just a fun run. Either way, it gives them an opportunity to honor their child to go ahead and talk a little bit about their child in the local community. Give people an outlet to be able to get involved with it. But it takes out a lot of the accounting. It takes out a lot of the legal struggles that come along with it. And, it also gives them a voice to be able to participate in a larger research project.

When you're starting an individual foundation or you're donating locally to your individual hospital, you really don't get a decision sometimes on how those funds are used. Both because you may not be investing millions of dollars at a time and because if you're investing it just locally, there may not be any trials that may be focusing on DIPG in your area. By being in a chapter, they get all of that. They're able to see some very large results, very large institutions in terms of the registry and connect consortium and everything being built. They actually get a voice in how those are being created. We need their help as much as they need ours. We're trying to give them some of the systems from it. But to be honest from our chapters, we get a lot of great ideas because this is a partnership, as it should be.

I hope this helps to kind of walk through some of the ways that you can get involved as a parent or even a patient that's in the fight for DIPG, DMG. I would offer one final note and that is, don't do it now. If you're in the fight and you're going day to day to hospitals and such like that. Focus on yourself, or focus on your child. That should really be the most important thing right now. There's plenty of time. And we, as parents that are on the other side of this, are here for you to try to help move it along while you can't. We still need your help, but there'll be time for that.

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