The world is grinding to a halt because of Coronavirus. Except for one thing that continues at the same pace … time. And time is the greatest enemy to children with Sanfilippo Syndrome.
Coronavirus is impacting the Sanfilippo community on a few crucial and intertwined fronts:
1). research/clinical trials; 2). fundraising/financial; and 3). risk of additional illness for children with Sanfilippo.
The significant impact on the first two will undoubtedly delay aggressive progress to find a treatment or cure for this rapidly-degenerative disease, as well as experimental treatments for children. It’s happening already. The third adds increased worry and stress to parents already dealing with the worst imaginable diagnosis for their child.
Some of the ways that Coronavirus is impacting the Sanfilippo community:
Planned fundraising events in the immediate days are being evaluated to possibly be postponed or cancelled. Just a few days ago, the Abby’s Alliance 5K in Houston, TX, was cancelled.
Fundraising events in the coming weeks and months are in limbo as organizers wait to see the progress of the virus. Among those up in the air are the Super Eliza 5K in Columbia, SC, coming up in April, and other events in May and June.
The plan to launch a new viral video campaign in late March, hoping to raise over $1M for Sanfilippo research, has been put on hold because the time is no longer right, based on Coronavirus in the news.
In-person meetings with donors are being cancelled, postponed, or being conducted via other means.
Research and clinical trials, including enrollment of the Foundation’s sponsored clinical trial treating children to reduce inflammation in the brain, are being put on hold as facilities restrict access and continued concerns about travel exposure.
Meetings with regulators, such as the Foundation’s important upcoming meeting with the FDA, are being changed from in-person to virtual settings.
Research projects to be funded later in 2020 and 2021 being re-evaluated based on ability to bring in the funding needed.
Staff at institutions working on Sanfilippo, including the Foundation, are navigating the disruptions to their lives, such as state-mandated school closures, and how it impacts their ability to work.
Children with Sanfilippo Syndrome may be at risk for more severe complications due to conroovirus, particularly those in the more severe stages of Sanfilippo Syndrome.
One of the characteristics of Sanfilippo is that children tend to put all sorts of things in their mouth including their hands, which makes it more difficult to keep potential viruses away, particularly the younger more active children with Sanfilippo.
For families who have children that take immunosuppressive medications (ie prednisone, tacrolimus, mycophenolate mofetil, and others), please consult with your doctor about any precautions needed for your individual circumstance.
Information is quickly changing, so please keep updated on CDC website, and see helpful resources links below.
Like you, we wait to see how far and long the impact of Coronavirus goes. In the meantime, we will continue doing our best to keep the fight to cure Sanfilippo moving forward as fast as possible. We are also working on short term, and longer term impact strategies.
We believe that this pandemic has given many a new and “all too real” perspective on the stresses that come with worrying if your loved ones will remain healthy. It’s just a glimpse into what Sanfilippo parents face every day after diagnosis. We understand that you and your family’s health are the primary concern, as well as your finances. And these should be as these are two of our primary needs in life, and we are right there with you. We hope we ALL can get back to a “new normal” soon.
Through it all, we are incredibly humbled and genuinely thankful for you. Your support – past, present, and future – means everything to us in the ability to maintain progress against this disease. One of our taglines in the past has been “In It Together.” Well we are all truly “in this together” and we will get through it together.
We wish you and your families safety and health throughout these trying times. We truly appreciate you and thank you.
There are so many free resources available now in light of the pandemic. Here are just a couple that we enjoyed during our previous period of isolation.
Does an ugly holiday sweater help you get into the seasonal spirit?
How about one with unicorns!
Better yet, this sweatshirt also helps find a cure for Sanfilippo Syndrome.
So what are you waiting for? Grab what’s sure to be you and your kids’ favorite holiday shirts this year, and enjoy knowing that you’re also helping cure kids with Sanfilippo Syndrome.
The shirt’s artwork features prancing unicorns, evergreen trees, snowflakes, and the reminder that “All I Want For Christmas Is A Cure.”
Shirts are available in adult and children’s sizes. Order soon to ensure delivery in time for the holidays.
Proceed of the 2019 ugly holiday sweater benefit Cure Sanfilippo Foundation.
Henry was just a puppy when he met the love of his life. Blair was bright eyed and dark haired, just like him, and they bonded instantly. “Constant companions” would be putting it lightly.
So when things started to change for Blair because of Sanfilippo Syndrome, Henry was more devoted to her than ever. She needed him, through the seizures, through her body’s slow loss of every ability, even through the moment when she took her last breath. And he was there, standing guard and comforting her.
At the age of 14, Blair passed away on April 4, 2017. Henry misses her every day, but he also fights for a day when special bonds like theirs no longer end too soon because of Sanfilippo Syndrome. He’s hoping to raise $100,000 and has created a three-minute video sharing his story that you can see on his GoFundMe pagewww.HenryAndBlair.com.
When Blair and Henry found each other, their lives changed forever. Help Henry change the lives of other Sanfilippo children, to find a cure, by sharing his story and fight.
A terminal diagnosis for a child upends the lives of the entire family. Often, people’s thoughts, sympathies, and prayers go to the child facing a shortened life and the parents left wrestling fate. But there’s another person(s) who is deeply impacted, one whose life is never the same: the sibling.
The care – doctors visits, therapies, treatment regimes, etc. – required for a terminally-ill child creates a vacuum of time, resources, attention, and capacity in a family. Yet, the siblings rise beyond expectations. They become more mature than their years should require, caretakers for their brother or sister, know medical details of diseases and treatments better than most. And yet, they’re still children. Children carrying more than their fair share, but with intense grace, compassion, and love. They understand putting others first, sacrifice, selflessness, and the shortness of time. While often outside the spotlight, these siblings inspire everyone they meet.
One such exceptional sibling is Grey Chapin, 15, whose sister Blair passed away from Sanfilippo Syndrome in 2017 at the same age. She’s been in the “family businesses” of fundraising for research to cure Sanfilippo Syndrome since she was 6-years-old with her annual purple lemonade stand, which has raised more than $150,000 to date and is available as a kit for other families to host. Following Blair’s passing, Grey realized how integral her support network had been in helping her through Blair’s life and death. However, she found that there is a lack of emotional support resources for siblings of terminally-ill children, so she decided to create one.
Launched in spring 2018, The B.L.A.I.R. Connection is a place for siblings to connect with others as they experience the challenges of having a terminally-ill brother or sister. Because though every child with a terminal illness is Brave, Loving, Amazing, Inspiring, and Relentless (B.L.A.I.R.), so are their siblings. The site already features nearly 30 posts from 11 siblings, and Grey recently added a “Be Positive” Collection to emphasize the positive aspects of a child’s relationship with their terminally-ill sibling. And has plans for continuing to expand the site’s functionality.
In March, Grey presented The B.L.A.I.R. Connection at the state competition of the Future Problem Solving Program in the “community problem-solving” individual division and won first place. She moves on to the international competition later this year.
Cure Sanfilippo Foundation had the chance to speak with Grey about her story and this new collection. Check out the Q&A with Cure Sanfilippo President Glenn O’Neill and Grey.
Tell us about yourself.
I am from Orlando, Florida. I’m a freshman in high school. I’m 15-years-old, and I really enjoy playing lacrosse and soccer. I play for my school team for both. And I love going to the beach, and I love playing with my two poodles, Henry and Hudson.
Tell us a bit about your sister Blair.
Blair was diagnosed with Sanfilippo Syndrome when she was 6-years-old. I was four at the time. Even as Sanfilippo took away her ability to do a lot of things, her huge personality always shone through. She was the sassiest person I’ve ever met. She’s hilarious. And she had, a smile that — I don’t know, everyone says this — but literally lit up a room. She loved jumping on our trampoline. She loved going to the beach. She liked holidays when the whole family would come over and it would be loud, and she loved watching Barney and all of her other shows and just being with us.
What are your earliest memories of Blair?
I definitely remember [the period] when she was saying words. I’m not sure if I completely remember when she was saying full sentences. I definitely remember that running around and wrestling and those kinds of things. We had this hallway in our old house all the way around the house and we would just run and chase each other around that. And I remember singing songs to her and having her, like finish the lyric.
You and your family have been advocating for research for Sanfilippo for a long time. Can you talk about some of that and your involvement?
My Dad started “Sing for Blair” five years ago or something like that. He started a GoFundMe and it got a lot of media coverage and a lot of celebrities sang for Blair. We got a lot of support from singers and artists and friends, which was really cool.
One of Blair’s old friends from preschool, Luke McMahon, started the “I Won’t Let Go” campaign where he actually wrote a song for Blair and made a music video to raise money for research.
The fundraiser that I’ve been most involved in is called Purple Lemonade. When I was six, my kindergarten class did a lemonade stand to save the manatees. If people would donate to save the manatees, then I could do something similar to raise money for Blair. So, that year we had our first purple lemonade stand, with purple representing courage. We started out very small that year, but we’ve had it annually ever since. Right now, I think we’ve raised over $150,000.
Tell us how and why The B.L.A.I.R. Connection got started. Where did this idea come from?
Blair passed away in April 2017 and, that July, I came up with the idea to start a sibling-support website. I, especially after she passed away, realized how grateful I was for the support system that I had throughout her life. We got to meet a lot of Sanfilippo families and I got to interact with a lot of siblings, but most siblings with a terminally-ill brothers or sisters don’t. My mom showed me the Courageous Parents Network, which is a support website for parents of kids with a terminal illness. I researched it and found there was nothing like this for siblings.
Is The B.L.A.I.R. Connection open to all siblings of children who have been diagnosed with any type of terminal illness?
Yes. The goal of the website is to help any sibling who has a brother or sister living with a terminal illness, just survived a terminal illness, or passed away from one.
Having something somewhere that people can at least read about other people’s experiences is one of the most powerful things. How has the response been so far to get submissions?
The site started in May 2018 – so not even a year yet – and about 11 siblings have written blogs, and some of them have written multiple ones.
I didn’t really have an expectation when I first started. I didn’t know how difficult it was going to be to try to get on a consistent upload schedule when, sometimes, people are taking a little bit longer to write a blog, or I can’t think of blog ideas, or I just can’t find a sibling that wants to write a blog. But the response has been pretty good.
The contacts in hospitals that I’ve made have confirmed the lack of sibling support. They’ve told me that they’re grateful to have a resource recommended for siblings. People recognizing that there’s a need for this resource in the terminal illness community has been really cool.
How did the idea for the new “Be Positive” collection come about?
I definitely understand the challenge of sitting down and writing a blog without any prompts, without any questions. So, I started a new sort of section of the website called “Collections” and each collection would go into a different topic.
I was hoping to make each topic sort of lighthearted. That’s why I started with this, the Be Positive Collection because it asks questions like, “What’s your favorite memory with your sibling? What’s your favorite activity to do with them?” This collection emphasizes the positive aspects of having a sibling with a terminal illness because sometimes it’s hard to find that.
It’s also helpful too; siblings want to contribute to the website, but don’t have time to sit down and write a blog or don’t know what they would write a blog about.
What are your plans for growing The B.L.A.I.R. Connection?
When I had the idea for the website, I wanted it to be more of a social-media type format [with the ability for siblings to directly connect with each other]. As I talked with the website designer and other people, I realized that that wasn’t very realistic. But it’s called “B.L.A.I.R. Connection” because part of the goal is to connect siblings and right now the website isn’t really accomplishing that because it’s posting blogs and they’re connecting [only] by reading each other’s blogs. They’re not actually being able to talk to each other or share experiences just with one another. That’s definitely a goal for the future, whether it’s a forum or some type of other way to connect.
The website has gotten a lot of traction, but I really want to focus on getting it honed to sibling viewers because that’s who it’s for. Then in the future, like way in the future, my goal is for a lot of hospitals and grieving centers and therapist to know about the website and to recommend it to siblings, too.
What’s this experience been like for you personally? How has it been seeing these other family stories that aren’t very different than what you’ve been through?
It’s more work than I thought it was going to be when I think back on it. I’ve spent so many hours working on this website, getting the website up, [and] e-mailing siblings, but it didn’t feel like work because I really have enjoyed it. It’s really rewarding.
Getting e-mails from parents who are on the website and saw it on Facebook and they say, “wow, this is really cool; My daughter could use this, I’m going to send it to her.” Getting those little messages or just putting up a blog at the end of the week has been really rewarding and made it all more than worth it.
It’s interesting to hear about other terminal illnesses because it’s so much different for Sanfilippo siblings compared to a cancer sibling. So, they might have a normal, pretty normal relationship with their sibling who has cancer because they haven’t had cancer all their life. My sister passed away from Sanfilippo and a sibling whose sister had cancer passed away; we can have a lot in common because, you know, we both have that grief in common. But it’s just an interesting to learn about how those experiences can be so different, yet similar also.
For those who read this, what would you like them to know about / call to action?
My only goal is just to help other siblings in whatever way the website could help them. I want them to use it that way. You, as a sibling, just to click on the link, read the blogs as they go out, or e-mail me to submit a blog, a photo, a drawing, a poem, or whatever it might be.
It will be really helpful to get the word out, too.
I really want to focus on getting it out to larger audiences and specific groups in need of something like this.
UPDATE – JUNE 2019
In June, Grey won first prize in the international competition for Future Problem Solving Program International in the Community Problem Solving category for The B.L.A.I.R. Connection.
Congratulations to Grey on this significant accomplishment.
Cure Sanfilippo Foundation is thrilled to announce that Katie Walton has accepted the position of Vice President of Marketing. Katie has been a key leader and volunteer for more than five years with the Foundation. Her expertise and insight has led to some of the core conceptual themes used by the Foundation, including graphics, website vision, birthday campaigns, marketing materials, and much more.
Katie’s story for the passion and interest in Cure Sanfilippo began while walking down the halls of Ohio children’s hospital in 2014:
“It all started with ear tubes for my four-month-old son. As I carried my son through the halls of Nationwide Children’s Hospital to outpatient surgery, I thought of the parents I was walking among, those shouldering unbearable burdens, and the thought of them never left me,” said Katie Walton. “Fast-forward two months later, I clicked onPeople.comarticle and learned about Sanfilippo Syndrome and the possible clinical trial at Nationwide Children’s Hospital. These parents were the kind I had been walking among, the ones I couldn’t forget because they could have just as easily been us. And if it were us, who would carry us? It would have to be the grace of strangers. Firmly believing that you have to put into this world what you hope to see out of it, I dove in to the fight to cure Sanfilippo Syndrome and remain more committed than ever. The ability to devote myself full time to supporting Cure Sanfilippo is an honor and personal passion.”
Glenn O’Neill, President of Cure Sanfilippo Foundation, stated: “We are extremely lucky to add Katie to our team. One of our continued challenges is spreading awareness for a disease few people have heard of and spreading this beyond the circles of the rare disease community. Katie brings not just passion, but many years of hands on experience in crafting messages and content to larger audiences. Katie will enhance our ability to professionally present and drive the Foundation mission, values, and accomplishments, in a customized way, to a variety of audiences via different mediums. This will lead to more engagement and more ongoing support, which is necessary to move our mission forward, faster; always our goal.”
Prior to joining Cure Sanfilippo Foundation, Katie worked for the Ohio Credit Union League, the state trade association for Ohio’s 250+ credit unions, for the past 15 years, including most recently as Vice President of Public Affairs. She oversaw all marketing, communications, public relations, and consumer awareness functions and served on the organization’s management team, providing strategic direction and leadership.
It can be a daunting task to ask for help from your community. Concerns ranging from how others will respond to you to just being plain uncomfortable saying you need help keeps so many people from reaching out to family, friends, and neighbors. However, we have seen time and again that one’s community will not only say yes to you, but will do so with open-hearts.
Our children’s birthdays are a big deal. Even more so in the Sanfilippo community. So, when your son or daughter’s big day is right around the corner, you brainstorm themes, decoration ideas, party favors, cake flavors all in the hopes of making it a great day. The Sarkar Family knew that they wanted their son’s fifth birthday to be extra special, and special it was thanks to their community.
By Jen Sarkar
“We are so glad we took a chance and asked our community for help.”
The best day ever. That is what our family aims for when it comes to birthdays. We try and make each and every birthday different and unique just like our children. We find the perfect theme, cake, decor, and celebrate the way that our children want to. After all this is the one day of the year that is truly all about them. Last year was no different, we wanted to make the day incredibly special for our son Carter, aka “C-Money.”
Just before Carter’s 4th birthday, he was diagnosed with Sanfilippo Syndrome. Sanfilippo is a rare, degenerative, and fatal disease that currently has no cure. We are not sure how many birthdays we will get with C-Money, so we make sure to celebrate every chance we get.
Turning five is a big deal in the Sanfilippo community; honestly every day is a big deal. These children are not able to live a full life due to this disease and it is often cut short in their teens. Typically, around five years old you can start to see this disease taking over as your child regresses and loses skills. Knowing what the future held we wanted to make what could be our son’s mid-life Birthday as big, vivacious, fun, and memorable as Carter.
My husband Samir and I discussed a party in the park, going to Disneyland, but none seemed quite fitting for this occasion. It needed to reflect Carter’s personality – it had to be exceptional. We brain-stormed a bit and then it hit us; we had to have a Halloween themed birthday party!
I can tell you that hands down Halloween is our family’s favorite holiday, especially Carter’s. He loves dressing up, seeing others in costumes, saying hi to people, meeting new friends, and who doesn’t love the endless candy?!
So, we had the theme but how could we pull off the trick-or-treating part that is so integral to this holiday. That’s when we had a light bulb moment. We would ask our community to help us have Halloween in May for Carter’s birthday. Without our neighbor’s support we wouldn’t be able to pull-off our idea and so the letter-writing commenced. Samir and I explained in our letter that Carter was turning five and how he loved all things Halloween. We explained why birthdays are extra monumental for our family telling the story of Carter’s diagnosis of Sanfilippo Syndrome. Door-to-door we went asking for help from neighbors we knew and some we didn’t. Would they be willing to open their homes to trick or treaters in May?
The letter included our contact information, so they could let us know if they were willing to participate and that this party would be open to anyone and everyone who wanted to join in the fun! If they said yes to our request we would provide them with the candy they needed and a sign designating their house as part of the birthday festivities.
Samir and I were confident that at least two of our neighbors would happily join us, but we never anticipated what happened next. My phone starting ringing off the hook. The neighbors on the next street over heard about our plan and wanted in. Then two of those neighbors shared our story with several other streets, whose residents wanted to show their support, as well.
By Carter’s birthday we had over 40 neighbors happily opening their homes to trick-or-treaters. Our community went above and beyond our wildest expectations. Words can’t quite express our gratitude for being apart of a neighborhood that would show Carter and our family so much love, support and kindness when we needed it most.
To this day I can never truly explain how meaningful this was to us. I still tear up over their generosity and get emotional over everything they did. People brought him gifts, greeted him with hugs and high fives {two of his favorite things} and just showed him an outpouring of love. Not to mention these amazing people took their Halloween décor out for only a few hours in the blazing heat of a California afternoon in May.
This was a day where we were able to have a sense of C-Money being a “typical” child and it was something our family will never forget. Not only was this Carter’s most memorable birthday to date, but we raised so much awareness for Sanfilippo Syndrome and reached our fundraising goal of $15,000 to benefit the Cure Sanfilippo Foundation. Cure Sanfilippo Foundation advocates for and funds research directed towards a cure and treatment options for patients with Sanfilippo Syndrome giving Carter and thousands of children like him a chance at life.
I look back on these pictures and remember every moment of that day. I remember the joy Carter had making new friends, hugging old ones, seeing all the decorations and costumes. He truly had the best day ever! We are so glad we took a chance and asked our community for help. I suppose this is a good reminder that vulnerability isn’t a bad thing.
Recently, I missed the opportunity to bring attention to someone who used a phrase that hurt me deeply. I hope to make that up here. I feel like Ihave a pretty thick skin, so was surprised myself at how much I was immediately affected. Let me explain:
I was sitting at a table recently and overhead a group talking and heard one of them make a joke. Something to the effect of “…he must have been riding the Short Bus that day”. It was a group of people that worked for the same company, but I didn’t know any of them. Without going into all of the detail, it wasn’t the setting where it was appropriate to “call out” this person and talk with them across the table, in front of her peers and possibly her supervisor, and I’m glad I didn’t. But I did nothing. I froze. I let the words and the moment overwhelm me and I froze, sinking in my chair…for about 10 minutes. I couldn’t concentrate on anything else. I felt sick in my stomach. They got up and left. I got up and left.
I wish now I would have done something. After reflection, I think I know what I could have done. I could have written a short note and handed it to her, as privately as possible, on the way out. The note would have said:
– – – – – – – – – – – – I don’t know you, but I overheard you talking with your colleagues at our table. I heard you making a reference to a “short bus” in a joking way. I don’t think you meant any harm or ill intent by it, and I’m sure the thought didn’t cross your mind how it might affect someone across the same table. I’m a father to a child with special needs. She’s 8 years old and has a terminal degenerative brain disease. Your comment and joke hurt me, in a way I didn’t even expect. I hope that my daughter might be able to ride to school in a bus someday….and yes, it will be that type of bus. I respectfully ask that you consider how words like this could impact other people. If you have children, I ask you take a moment to think about how they might grow up hearing and telling jokes like this. I appreciate you reading this. Thank you. – – – – – – – – – – – –
Now to be honest, I grew up in the 80’s and I’m sure I remember grade school friends making “short bus” jokes. I’m also sure when I was young I used the “r” word in ways where I didn’t even think about special needs kids. “Stop being “re…ded”, “That’s just “re…ded”. That’s probably because “special needs” wasn’t in my life. I didn’t live it day in and day out. I feel these words still may be common slang in grade schools today and with some adults, albeit not to the same level. I’m so glad to see the campaigns like the#EndTheWordcampaign. We can do more as parents to keep educating about this. Have that discussion please. Some sayings are just not appropriate, and it’s time to help remove them as slang or in jokes. Let’s do it conversation by conversation….or note by note. “Compassionately correct”.
Maybe this post will reach someone who will take an extra moment of pause, and consider their words closely, and make a change. I don’t think anyone wants to make another feel like I did at that table.
The world is grinding to a halt because of Coronavirus. Except for one thing that continues at the same pace … time. And time is the greatest enemy to children with Sanfilippo Syndrome.
So when things started to change for Blair because of Sanfilippo Syndrome, Henry was more devoted to her than ever. She needed him, through the seizures, through her body’s slow loss of every ability, even through the moment when she took her last breath. And he was there, standing guard and comforting her.
A terminal diagnosis for a child upends the lives of the entire family. Often, people’s thoughts, sympathies, and prayers go to the child facing a shortened life and the parents left wrestling fate. But there’s another person(s) who is deeply impacted, one whose life is never the same: the sibling. 
In March, Grey presented The B.L.A.I.R. Connection at the 
Blair was diagnosed with Sanfilippo Syndrome when she was 6-years-old. I was four at the time. Even as Sanfilippo took away her ability to do a lot of things, her huge personality always shone through. She was the sassiest person I’ve ever met. She’s hilarious. And she had, a smile that — I don’t know, everyone says this — but literally lit up a room. She loved jumping on our trampoline. She loved going to the beach. She liked holidays when the whole family would come over and it would be loud, and she loved watching Barney and all of her other shows and just being with us.
The fundraiser that I’ve been most involved in is called Purple Lemonade. When I was six, my kindergarten class did a lemonade stand to save the manatees. If people would donate to save the manatees, then I could do something similar to raise money for Blair. So, that year we had our first purple lemonade stand, with purple representing courage. We started out very small that year, but we’ve had it annually ever since. Right now, I think we’ve raised over $150,000. 
In June, Grey won first prize 
The best day ever. That is what our family aims for when it comes to birthdays. We try and make each and every birthday different and unique just like our children. We find the perfect theme, cake, decor, and celebrate the way that our children want to. After all this is the one day of the year that is truly all about them. Last year was no different, we wanted to make the day incredibly special for 
The letter included our contact information, so they could let us know if they were willing to participate and that this party would be open to anyone and everyone who wanted to join in the fun! If they said yes to our request we would provide them with the candy they needed and a sign designating their house as part of the birthday festivities.
Samir and I were confident that at least two of our neighbors would happily join us, but we never anticipated what happened next. My phone starting ringing off the hook. The neighbors on the next street over heard about our plan and wanted in. Then two of those neighbors shared our story with several other streets, whose residents wanted to show their support, as well.
To this day I can never truly explain how meaningful this was to us. I still tear up over their generosity and get emotional over everything they did. People brought him gifts, greeted him with hugs and high fives {two of his favorite things} and just showed him an outpouring of love. Not to mention these amazing people took their Halloween décor out for only a few hours in the blazing heat of a California afternoon in May.
Recently, I missed the opportunity to bring attention to someone who used a phrase that hurt me deeply. I hope to make that up here. I feel like I