Working Through Social Media Anxiety Disorder

Submitted March 6, 2018 by Kyle Herschelman

I’m not the most socially outgoing person. Like, at a party, I’m not the guy hiding in the corner. I’m the guy not at the party. But when it comes to social media, I have a tendency to come out of my shell a little bit, especially when it comes to talking about my daughter Grace and our journey with Infantile Neuroaxonal Dystrophy.

I think the biggest reason for my extroverted internet presence when it comes to all things INAD is that without others knowing about the disease, we will never find a cure. That’s why I’m always looking for a way to connect with people through Twitter, Facebook and Instagram and bring them into our Grace-Filled Journey. I’m far from a social media guru, but I’ve managed to stumble across a few things that have worked for us on our journey.

I think the most important thing to consider when raising awareness for anything that personally affects you is that you have to determine the level in which you are comfortable sharing your story. My wife Mary and I are both writers, so it was natural for us to start our blog, A Grace-Filled Journey. For others, the desire to be more private may be more appealing, which is totally fine. All INAD parents are going through something that no parent would ever wish upon their worst enemy and how they get through the more trying moments is up to them.

Even if you’re not cracked up about social media or sharing things with a bunch of strangers (or even a bunch of friends), there are still ways to spread awareness about INAD. If you have an event or news item that you want people to know about it, but aren’t on social media, just email it to the INADcure Foundation at info@inadcure.org. They can make sure your message goes out to the world and to the people who will want to see it the most.

If you’re on social media, but don’t really feel like putting yourself and your family out there personally, there are still ways to raise awareness. The INAD Cure Foundation has a Facebook page (facebook.com/inadcure.org), a Twitter account (@inadcure) and an Instagram account (@inadcure) and sharing some of their posts helps raise awareness for INAD. You can also share posts or tweets from other families that you follow who have pages set up for their battle.

We have a tendency to post quite a bit. We share quite a few photos of Grace on various adventures, whether it be something she did at school or a trip to somewhere special. There are some concerns about people using her photos for unscrupulous means, but unfortunately its just a negative side affect to raising awareness this way. We personally feel like the good outweighs the bad, but that is a decision each family has to make for itself. We also use hashtags quite a bit, which make it easier for people to search for similar posts. The biggest one we use is #BeatINAD because it’s simple, clean and conveys our real message in just nine little characters. We also use the #INADcure tag some and some Grace specific hashtags, like #TeamGrace (usually involving sports) or #AGraceFilledJourney.

We also like to use social media as a way to connect with those who we may never have any contact with in other ways. For example, if we are reading a book that Grace seems to enjoy a lot, we may tweet out a photo of her smiling with the book and tag the author in the post. We’ve made and maintained some pretty awesome connections with people through Twitter and Facebook, people who have supported us in the bad times and helped us raise awareness in the good.

That doesn’t mean all of our endeavors have been successful. We lobbied to get Grace a meeting with Ellen DeGeneres and had hundreds of retweets and likes on Twitter. Nothing ever came of it, which isn’t a huge surprise when you see the sheer number of people that reach out to her every single day, each one hoping that the talk show host sheds some light on their worthy cause.

We’re not going to stop trying though. We like to say that you miss 100 percent of the shots you don’t take so we will continue to reach out to those who can help us make a difference. Our most successful connections have come from those who we share a connection with. We keep in touch with a Major League Baseball player who caught Grace’s first pitch when he was a minor leaguer in Arkansas. U.S. Representative Rodney Davis is our congressman and he was willing to give a speech on the house floor about Rare Disease Day and our fight to beat INAD. His staff then shared the video of his speech on their social media accounts, a great way for new people to see our story. We made a connection with an up-and-coming chef in St. Louis who just happened to name his restaurant “Grace Meat+Three”. The food is amazing there, but the love and support that he and his staff have shown us is even better.

All of these things build up a connection with people and make them feel like they are part of your story. When they feel that way, they are more likely to help you when you need them, whether it’s by lending an encouraging word or by helping you raise funds for (hopefully) life saving research like the study that Dr. Paul Kotzbauer is doing at Washington University. No sharing a picture or a story on Facebook or Twitter won’t cure INAD, but it might convince someone to make a donation to the fight, which will one day lead to a cure.

Hopefully this has been helpful, but if you have any questions, feel free to email the INAD Cure Foundation at info@inadcure.org or me personally at agracefilledjourney@gmail.com. I don’t have all the answers, but we are stronger together in our search for a cure. Who knows, there might even be a party when we do #BeatINAD and you can bet that I’ll be there. Probably…

If you’re an INAD family that has a blog, a Facebook page, a Twitter page, or some other social media account, we want to here from you! Reach out to us on Facebook (facebook.com/inadcure.org), Twitter (@inadcure) or Instagram (@inadcure) or by email at info@inadcure.org and we will be sure to share and follow your page!

We Believe In Research, We Believe In Hope

Submitted January 14, 2018 by Kyle Herschelman

Research is huge in the rare disease community. Of course, I mean the search for cures, treatments, new methods and new technologies to treat those who are affected by these often unknown killers, but I also mean research by those who are affected by the diseases the most. When my wife Mary and I first found out that our daughter Grace had this strange new genetic disorder called “infantile neuroaxonal dystrophy” the first thing we did was try to find out as much about it as possible.

At the time, the research we were doing was the only research that we knew of, but soon we learned that there was a gene therapy study going on in the United Kingdom under Dr. Manju Kurian of University College London. We also found out that the project was funded in large part through the efforts of one family, the Phillips, whose son Jake battling INAD like our Grace was.

We were able to connect with Kristin Phillips through the NBIA Research Group at Oregon Health and Science University and she let us know that another study was on the horizon, this one closer to home. In our area, about an hour north of St. Louis, MO, in Hillsboro, IL, the Washington University School of Medicine is not only well known, but well respected. The fact that this new study would take place at Wash U was inspiring to us and we immediately began figuring out ways to support it.

The study itself is well beyond my expertise, but here’s what I can tell you. Dr. Paul Kotzbauer and his team are looking for ways to improve enzyme function in the PLA2G6 gene, which is the gene responsible for INAD. Grace received two mutated copies of the gene from Mary and I, which explains why she has the disease, but it is recessive in us since we received at least one good copy from our parents.

The goal of Dr. Kotzbauer’s study is to screen already existing drugs and new chemical compounds to see if any of these can help the PLA2G6 enzyme function better or can stimulate other enzymes to compensate for what the PLA2G6 gene lacks. A little lost? So were we, but we knew that basically, Dr. Kotzbauer and his team were looking for a way to treat this defective gene.

That was in 2015. Two years later, INAD families have raised more than $300,000 for the study, with our family raising $100,000 for the cause. Almost all for the money we have raised has been from families just like our own, who have given small amounts just to be a part of what we have dubbed our “Grace-Filled Journey”. I’ll talk more about some of the ways our community has helped fund this study in the future, but the important thing to note is that none of this funding would be possible without the INAD families and their dedication to finding something to help their children.

When we started thinking about fundraising, there wasn’t really a way to connect with families and join together for this common cause. We had the support group, but not all families are in the same situation and some efforts are more focused toward getting their kiddos the best care possible. We are very fortunate that Mary and I have insurance and loved ones who can help us out with the costs, but we know that this isn’t the case for everyone.

For those who did want to help raise money to find a cure, the lack of a not-for-profit focusing on INAD research was often a stumbling block. Now, the INADCure Foundation has helped fill that void in a big way. Just a few short months since it was organized, families have already made a big impact on the future of INAD research as the INADCure Foundation has made a $150,000 grant to help Dr. Kotzbauer continue and expand his research, with a commitment to another $200,000 in the future.

This funding will help Dr. Kotzbauer and his team continue his current strategies looking for treatments, but it will also add a gene therapy aspect to the study. With gene therapy, the goal isn’t to treat the disease. The goal is to cure it.

With significant progress going on in regards to vival vectors and how they deliver genes to the brain, Dr. Kotzbauer will be collaborating with Dr. Mark Sands, an expert in gene therapy at Washington University, to see if it is possible to safely deliver PLA2G6 gene therapy. The team will also be testing an enzyme replacement strategy to deliver the missing PLA2G6 protein to the brain, which could be used with gene therapy or by itself for treatment of INAD.

All of this is exciting. A little over my head, but exciting. Ultimately, if Dr. Kotzbauer and his team are successful, it means that INAD would no longer be a death sentence. No longer would parents have to watch their child’s skills diminish or hear that most children with INAD don’t live much past their eighth birthday. It means hope.

That is why we support Dr. Kotzbauer’s study and the INADCure Foundation’s efforts. Recently we sent a check for $55,000 to the INADCure Foundation, the majority of which came from a 5K run and walk that we held in Hillsboro and across the globe thanks to a virtual option. More than 500 people came to this community of 6,000 in support of Grace and the fight against INAD. Among them, Dr. Paul Kotzbauer and several members of his team, who made the trip from St. Louis to witness first hand what families and friends can do to find a cure. He and his team are believers in the power of INAD families. And we believe that Dr. Kotzbauer’s research can find a cure for our kids.