As you read Avram’s story, please keep in mind that this is Avram’s personal experience and should not be taken as advice. This article does not imply an endorsement from Takeda for the organization mentioned.
Avram and his wife Monica’s world changed when they found out their son, Kalel, was diagnosed with Hunter syndrome (also known as mucopolysaccharidosis type II, or MPS II).
Since day 1 they have made it their job to educate family, friends, and their community about this rare condition. They started small with events to help raise awareness and funds for research. As they gained momentum, Avram and Monica decided to form the MPS SuperHero Foundation, a non‑profit dedicated to Kalel.
In this interview, Avram shares how his foundation was created and what continues to motivate him, and offers advice for other families seeking support in this small but mighty community.
Q:After Kalel’s diagnosis, what role did advocacy organizations play in your life?
A:We were bombarded with this diagnosis. Before we even received any materials from Kalel’s healthcare team, Monica and I started doing our own research. We had no knowledge of how to run a non-profit organization, or really what advocacy meant.
Q:How was the MPS SuperHero Foundation created? What made you decide to take on such a daunting task?
A:It is hard to focus on anything else when you hear that kind of news about your son. During this time, we attended a conference held by a non-profit to learn more about Hunter syndrome. We collected so much information that we were overwhelmed, but we also wanted to help other people like us.
My father actually had a friend who knew how to set up a non-profit organization. After that conference, we gave my father’s friend all the information we had. This helped piece together our organization.
Kalel was diagnosed in April, and by the end of July, our organization was up and running. We didn’t really know what we were doing, but we knew we had to start this. Little did we know that we had this huge journey ahead of us.
Q:What is the mission of the MPS SuperHero Foundation?
A:Coming back from that first conference, Monica and I knew 3 things that turned into our bylaws:
1) Help every family in any way possible
2) Raise funds for research
3) Advocate and be the voice for children with Hunter syndrome
That’s what we decided to start off with. We kept it as broad as possible so that we were able to tackle every angle.
We ended up coming across a couple of other organizations that were as small as ours, some of them even smaller, and they were in for the same mission. We decided to work together in raising funds for research.
It was at that point we started doing our events. We held what has become our annual event called the Kickin’ for a Cure Kickball Tournament. We got firefighters, police officers, government officials, anybody that you can think of to come out and support us.
From there, we started doing presentations for local towns to help promote our events and request donations. Some of these towns ended up officially declaring May 15th as MPS Awareness Day.
These small things didn’t seem as big, but when you start putting them all together, we created a movement that was fulfilling. But we weren’t filled. We were happy doing it, but we would not stop, and we’d do it again.
Q:When you first started the MPS SuperHero Foundation, were you working locally or did it start out with a bigger plan?
A:As I mentioned earlier, it started out as a kickball tournament, and we were so surprised to see the turnout. It brought so much more attention to the organization and many people wanted to start helping.
What ended up being something that started as small as a family gathering evolved into events that got bigger and bigger. It got to the point where we were pretty much all over South Florida. And then it started making its way north. We have support in North Carolina now, thanks to my niece. She started pushing and getting her parents heavily involved in North Carolina.
And then it grew in the virtual world. Anyone that would search “Hunter syndrome” or “MPS” would end up seeing our work. The organization started getting more attention from other non-profit organizations or other people that just wanted to help. We didn’t expect it to get this big. And it was all part of what I call collateral beauty.
All of these organizations started coming together to raise money to help fund clinical research trials. We raised a lot of money, and we didn’t think it would get that big. But it did.
As I look back, it’s one of those moments of feeling proud to know that we did one small event. Then the next event was a little bit bigger. And the one after that got even bigger. You put all of these together and see what impact you’ve made.
Q:How do other parents who are going through a similar situation fuel your determination to keep going?
A:You have some families who are so dedicated. They do not sleep and they continue on. I’ve met a lot of these personally, and I really look up to them. Some of them are my mentors. Then, there’s some families that feel like they just want to enjoy whatever time they have. They don’t want to exert too much more energy on trying to do something for their child instead of just being there for their child.
There are some families that are heavily involved and some that are not, and that’s okay. I cannot judge someone on their level of commitment towards advocating for not only their own child, but for all of the children with Hunter syndrome.
Q:How do you deal with obstacles that turn up?
A:We’ve had many instances where a big obstacle would be presented in front of us. When I was in high school, I had a teacher that told me there was a group of people that used to live a long time ago, and they had their own tribe.
The biggest rule in their tribe was to not worry. If there’s something you can do about it, then you shouldn’t worry—you should go out and do it. If there’s nothing you can do about it, then you shouldn’t worry because there’s nothing you can do about it.
That is how we pretty much tackle every situation, obstacle, wall, or barrier. We will knock on a door and if we can knock it down and it worked, then great. If not, then we would move on to the next. We can’t allow ourselves to stress or dwell over any barriers. You can’t move forward that way.
Q:What is your approach when it comes to working with healthcare providers as an advocate?
A:I think Kalel’s diagnosis story is very similar to other families, but it’s about being able to have the right person hear your story. I have a list of families that are far more interesting than myself and they’ve done so much more work than I’ve ever done. They are the definition of people who move mountains.
So when I get approached by healthcare providers or anyone else for that matter, I think about what my mentor would do. He is such an important person in the Hunter syndrome community. If I could follow his exact steps in life and do what he did, I would feel more fulfilled.
So when I am working with others, I try to think, “How would he approach this response?” It’s definitely a big shoe to fill, but if my foot can fit halfway through his shoe, then I feel like I’m doing a good job.
Q:Can you tell us what a typical day is like for the head of a non-profit advocacy group?
A:It’s overshadowed by the life of a father. People look at us and think we’ve done so much. People think that we’re great parents for doing what we do. Don’t get me wrong, I appreciate all the nice things, but as an organization, I don’t feel like we’ve done enough. Between moving across the country, the pandemic, and other things, we have had to put our advocacy work on the back burner.
So now, we are trying to do little things in our new hometown. For example this week, my wife and I taped posters for MPS Awareness Day all over our kids’ school. We worked together with the principal and were able to get everyone in the school to wear purple.
These small things can feel like it doesn’t create a huge impact, but now there’s a whole school that knows what Hunter syndrome is. That’s what we continue to do. If there’s a bigger project available for us, we’re jumping on it. In the meantime, we will continue to hand out bracelets that say, “I’m a superhero” and let people know about our website.
Q:What advice would you give to someone in the Hunter syndrome community looking to get involved in advocacy?
A:I think the number one thing that you should do before doing anything else is to sign up for the National MPS Society Family Conference. That happens every year. Not only are you going to meet so many families that are in the exact same position as you are, but you’re also going to meet other families that have already started their journey. These families have moved mountains and parted seas and have so much information to share with you.
Q:Is there anything else you’d recommend to a newly diagnosed family?
A:I’d recommend that all families should join one of the private social media groups about Hunter syndrome. We’re such a close-knit community. As a parent or guardian, that is a great place to go. I’ve learned so much information. I’ve had so much support. I’ve had so many positive experiences.
Even for certain medical procedures, it can be helpful to reach out to the group and see if anyone has advice about a similar experience. For instance, Kalel needed a procedure that would lengthen his Achilles tendon because he had a common symptom called tiptoe walking. His heels would never touch the floor.
His healthcare provider recommended this procedure, but my wife and I went on to our social media group and asked if anyone’s child went through this. Immediately, we got 20 different comments. There’s so much information presented in front of you that you’re able to make the best educated decision for yourself.
Q:How do you sift through the amount of information you get on social media to figure out what is most important?
A:I try to funnel all the information I get and grab the bones of it all. Then I do my own research. I like to look at different medical articles and websites to compare and contrast all the information that was given to me.
Then, with all of that, I cross my fingers and hope Kalel’s healthcare team will listen. And if they don’t, then I request to speak to another healthcare team member.
Q:What is your biggest takeaway that you’ve had from being in advocacy, or as a parent of a child with a rare disease?
A:I think the biggest takeaway is to ask anyone for help and the worst thing that they will say is no.
You won’t know unless you knock on that door. And if somebody opens and allows you to put that foot inside, that’s all you need.
That’s all I’ve ever been trying to do, is just knock on someone’s door. And if they open, I’m pouring my heart out and hoping they let me put a foot inside of their door. And if not, it’s okay, because there’s a whole neighborhood that I have to get through.
Tagged in: Advocacy, support, community, relationships