CEO and Founder Brandon Hampton has decided to use their quality knives to make an impact in the Sanfilippo community. He is donating 10% of EVERY KNIFE that is sold in the next run of its preorder 10-inch chef knives to Cure Sanfilippo Foundation.
“As a parent, it’s really tough seeing what they have to go through. I wouldn’t wish it on anyone. And I’m excited to be a part of trying to make these parents and kids’ lives better,” said Brandon in his Facebook video announcing this special run of knives.
Knives are now available for pre-order and orders will likely ship by the end of April. There’s no limit to the number that will be sold benefiting the Foundation.
All of Meglio’s materials are American made. All of its vendors are located in America. And all of the labor is done in America.
Meglio Knives has done promotions to benefit others in need previously. However, Cure Sanfilippo Foundation is the first charitable organization the knife maker has chosen to benefit.
“We are very honored to have Brandon and Meglio Knives support the fight to cure Sanfilippo Syndrome,” said Glenn O’Neill, President of Cure Sanfilippo Foundation. “These exceptional knives will last for generations, as will their impact in helping accelerate research to cure Sanfilippo Syndrome. A cure is even closer because of Meglio Knives and its customers.”
Before beginning Meglio Knives, Brandon worked with the mother of Emmy, who has Sanfilippo Syndrome. Their families have remained friends, and that friendship inspired Brandon to find a way to help.
Cure Sanfilippo Foundation has an ambitious plan for the next three years:
5 clinical trials, treating 100 children, to prove at least 1 effective treatmentAmazing things have happened in the six years since the Foundation was created because of the generosity of tens of thousands of people and the hard work of families and friends of children with Sanfilippo around the world.
So much progress toward a cure has been made. But there still isn’t an approved treatment or cure at this time. Yet.
We have an ambitious plan to bring more clinical trials to children in the next three years. AND YOU CAN HELP MAKE IT HAPPEN.
The Three-Year Plan:By driving the pace of science, we will find a cure in this lifetime.
The remarkable support, progress, and need inspired the Foundation to create an audacious plan for the next three years. Because the supporters and families have proven that achieving bold goals is possible.
Clinical trials are where the rubber meets the road, scientifically. It’s the crucial step of determining
whether earlier research is able to show the same therapeutic benefits in people.
There are no shortcuts in science.A cure requires significant resources. The daring price tag for this initiative is $10 million.
It’s a big goal. But it can happen with support.
Despite these dramatic costs, Cure Sanfilippo Foundation is finding
innovative and collaborative ways to support and conduct clinical trials, as
well as research.
These strategies make your donations go further. It makes $10 million help even more children, and with an effective treatment, potentially thousands.
The Future You Give BackWith a cure, families like these can dream of the future again.
How You Can HelpYour support, now and tomorrow, gives children the chance at life.
Every donation is deeply appreciated. And a multi-year commitment ensure the Foundation can achieve this plan to bring about these clinical trials in three years.
About the Foundation
Rose also has Sanfilippo Syndrome, a terminal children’s disease likened to Alzheimer’s in children.
Volunteer members of the Tournament of Roses volunteer and the 2020 Royal Court worked with Make-A-Wish Greater Los Angeles to fulfill Rose’s dream of being a princess, complete with a magical royal coronation.
The wish-made-real had several special moments for Rose and her family.
In late October, Rose was crowned “Princess for the Day” and enjoyed a day of delights.
As described by Make-A-Wish Greater Los Angeles … “On a gorgeous, sunny day in Pasadena this October, the community came out in droves for the coronation of Princess Rose. She was welcomed by the Royal Court, including Rose Queen Camille who gave her a royal makeover, complete with custom princess dresses for Rose and her sister. Then Rose was showered with Frozen-themed princess gifts (her favorite!) before she was whisked off to a tea party complete with rose-infused tea from the famed Langham Hotel and all the sweet treats she could eat. The sound of trumpets beckoned her to the front stairs of the historic Tournament House, where she was surprised to find hundreds of well-wishers who came out with signs to cheer her on. Here she was fitted with her new crown and coronated as Princess Rose of Pasadena. A Pasadena Police Officer even served as her Prince Charming and escorted her to a horse-drawn carriage, which drove her around the kingdom of Pasadena. Rose squealed in excitement the entire day and sang along to her favorite songs while waving to her royal subjects.”
The coronation was featured in The Pasadena Star:
In addition to the amazing coronation, Rose rode in the La Puenta Holiday Parade in a vintage sports car and the Covina and Glendora Christmas Parades. Proudly wearing her tiara and sash, of course.
On Jan. 1 of the New Year, Rose and her family enjoyed front-row seats at the 2020 Rose Parade. Rose and her family delighted at seeing the marching bands, flower-covered floats, and performers up close. She especially enjoyed the float depicting the parade’s theme of “The Power of Hope.”
This special honor recently sparked a conversation about wishes between Rose’s big sister and mom Muna, which she shared as a letter to Rose on Facebook:
“Your sister asked me the other day what my ‘make-a-wish’ would be. Well, I didn’t tell her because I thought I’d be too much for 7-year-old heart to take. My wish would be for a cure for this cruel disease. A cure not only for you, but for every kiddo, every family suffering watching their child die right now! It might not have been to much for your sister because she said, ‘I’d wish for a time machine to go into the future get the cure for Sanfilippo and bring it back.’ She knows that a cure will come one day. Rose, you have a whole community around you advocating and praying that future cure comes soon. No matter what the future holds, you will always be our Princess. I know no matter how your life goes, you’ll always be rocking on. We love you more than we could ever say.”
This is an option for any Type of Sanfilippo (A, B, C, D).
Read the full listing at https://clinicaltrials.gov/ct2/show/NCT04018755.
Study DescriptionInflammation has been connected with disease pathogenesis in the MPS disorders. Therapies aimed at decreasing inflammation are currently being studied in many MPS disorders and benefits in both brain and other parts of the body have been reported.
Decreasing interleukin-1 (IL-1) in an animal model of MPS III showed benefits in brain disease and behavior. Thus, we think that Anakinra (Kineret), which decreases IL-1 levels in the body, will improve behavioral and other problems in children with MPS III.
The expected potential direct benefits include, but are not limited to, improved behavior, sleep, stooling, communication, mood, and gait; as well as decreased seizure frequency, disordered movement, and fatigue.
However, there is no guarantee that participants will get any benefit from being in this study.
Study Contact Information
If interested, please contact the Clinical Trial site, Lundquist Institute (formerly LA Biomed). All contact details can be found at link below.
If you have any questions for the study collaborator, Cure Sanfilippo Foundation, e-mail Contact@CureSanfilippoFoundation.org./.
OutFront Media featured Carson and the fight to cure Sanfilippo Syndrome on multiple billboards this holiday season.
According to Carson’s mom Sara, “He wasn’t sure what to think when he saw his face up on the billboard!”
The week of Dec. 16, Carson was appearing on the billboards at 270 & McDonnell, Lindbergh & Tesson, and Hwy 94 & Jungs Station. The will continue running the following week and possibly on more billboards.
Carson has Sanfilippo Syndrome Type A and he and his family live in O’Fallon, MO, a suburb of St. Louis. You can read his family’s words about how Sanfilippo has impacted their lives.
Thank you to OutFront Media for bringing awareness to Sanfilippo Syndrome and efforts to find a cure.
In late December, OutFront Media added three more billboards featuring Carson in the greater St. Louis area. This brings the total number of billboards featuring Carson to six during the holiday season.
Again, many, many thanks to OutFront Media for their generosity and willingness to spotlight a rare disease.
Sharing food is a universal symbol of love, gratitude, and caring. All of which we have in abundance for you, our supporters.
Here are some treasured recipes from several of Sanfilippo families as a symbol of our profound gratitude for your support. Perhaps one or two of these favorite family recipes will be a part of your holiday celebrations.
We hope they bring you joy (and lots of compliments!).
The Butler Family’s Fruit Cake
From Tom, Leighann, Ella, and Paisleigh (MPS IIIA)
1 lb butter, melted
4 cups self-rising flour
2-1/2 cups sugar
1 lb white raisins
1 lb red cherries
1/2 lb green cherries
1 lb candied pineapple
1 lb nuts
1 tsp lemon juice
Place nuts and fruit together in a bowl, and sprinkle with lemon juice. Mix all together. In another bowl, mix flour, eggs, and sugar. Add melted butter. Mix well. Pour over fruit and nuts. Mix.
Bake at 250°F for two hours.
The Byers Family’s Cranberry-Glazed MeatballsFrom Tim, Valerie, Will (MPS IIIB), and Samantha
1-1/2 lb lean ground beef
1/2 cup onion, finely chopped
1/2 cup plain bread crumbs
1/2 tsp salt
1/8 tsp pepper
2 eggs, slightly beaten
12 oz bottle chili sauce
8 oz jellied cranberry sauce
Preheat oven to 375°F. In large bowl, combine beef, onion, bread crumbs, salt, pepper, and beaten eggs. Mix well. Shape into 60 1-inch meatballs. Place on ungreased baking pan.
Bake at 375°F for 25 to 30 minutes until meatballs are no longer pink.
Combine chili and cranberry sauces in large sauce pan, blending well. Bring to a boil over medium heat. Reduce heat to low; simmer for 5 minutes, stirring occasionally. Add meatballs to sauce, stir to coat. Cook until thoroughly heated, stirring occasionally.
The Esposito Family’s Roasted Garlic Guacamole Dip
From Dave, Elise, Keira (MPS IIIA) and Keaton
1/2 of a medium yellow or red onion, cut into coarse slices
1/2 cup of fresh cilantro leaves, stems removed
1/2 of a jalapeño pepper
10-12 cloves freshly-roasted garlic
3 tbsp lime juice
5 to 6 medium-ripe avocados
1/2 cup diced tomatoes*
1 tsp kosher salt
1/2 tsp garlic salt
1/2 tsp of Creole seasoning
1/3 cup of Cotija cheese, crumbled**
1/8 tsp of a chili powder or cayenne pepper, optional
Remove the seeds and white, inner ribs from the 1/2 of a jalapeno pepper. Place the jalapeno. Combine with onion, cilantro, garlic, and lime juice in a food processor until chunkily puréed. Set aside.
Slice the avocados in half and remove the pit. Scope the meat out from the inner walls of the outer skin and place in a bowl.
Use a potato masher to mash until desired consistency/texture. With a mixing spoon, fold the tomatoes, salt, garlic salt, Creole seasoning, and cheese into the puree.
Stir the avocadoes into the puree very well, but gently, to combine and make sure the seasonings are evenly distributed. If you want it spicier, add the chili powder or cayenne pepper. Serve with tortilla chips. Recipe adapted from Jeffrey Eisner.
*If using canned tomatoes, make sure to drain thoroughly.
**Substitute with grated Parmesan if you absolutely can’t find Cotija.
JACKSON’s Family’S Maine Blueberry Pie
From Hannah, Allan, and Jackson (MPS IIIA)
2 cups flour
1-1/2 tsp sugar
1 tsp salt
3/4 cup shortening (Crisco is best)
1/4 cup cold water
1-1/2 tsp vinegar
3 cups frozen Maine Wild Blueberries
1/2 cup sugar
1/8 cup tapioca
Preheat over to 425°F. Mix together flour, sugar, and salt. With pastry blender, add the shortening. In a separate bowl, beat together egg, cold water, and vinegar. Combine dry and wet ingredients. *This makes enough for one pie (a bottom and top crust).
For the filling, mix together blueberries, sugar, and tapioca in a large bowl. Place filling on top of bottom crust. Place top crust on and sake edges. Make several slits on top crust to vent steam.
Bake at 425°F for 15 minutes, then turn down to 375°F for 45 minutes.
The Sarkar Family’s Spinach-Artichoke Dip
From Samir, Jen, Sophia, and Carter (MPS IIIA)
8 oz cream cheese
16 oz sour cream or plain Greek yogurt
1 stick of unsalted butter
1-1/2 cup shredded Parmesan cheese
14 oz. of quartered artichoke hearts, drained and coarsely chopped
4 oz diced jalapenos, drained
10 oz frozen spinach, thawed and drained
2 to 3 cloves garlic
In a large pit, melt butter then add cream cheese, sour cream, and Parmesan cheese, stirring often until fully melted and smooth. Add artichoke hearts, jalapenos, and spinach. Then add garlic. Stir all together. Put in a crockpot on low heat and serve with chips or veggies.
The Shamaly Family’s Sour-Cream Coffee Cake
From Kerry, Josephine, Alexander, and Ellie (MPS IIIB)
1 cup finely-chopped California walnuts
1/2 cup sugar
1 tsp cinnamon
1/2 cup butter or margarine
1 cup sugar
2 cups all-purpose flour
1 cup sour cream
1 tsp double-acting baking powder
1 tsp baking soda
1 tsp vanilla extract
About two hours or a day ahead: In a small bowl, combine nuts, 1/2 cup sugar, and cinnamon; set aside.
Preheat oven to 350°F. Grease 9-inch tube pan.
In a large bowl, with a mixer at medium speed, beat 1 cup sugar with butter or margarine until light and fluffy. Add remaining ingredients and beat at low speed until blended, constantly scraping bowl with rubber spatula. At medium speed, beat 3 minutes, occasionally scraping.
Spread half of batter in pan; sprinkle with half of nut mixture. Spread evenly with remaining batter and spring with remaining nut mixture.
Bake at 350°F for 60 to 65 minutes until cake pulls away from side of pan. Cool in pan on wire rack for 10 minutes. Loosen inside edge; invert from pan onto wire rack.
To serve later, cover completely and wrap. Makes 8 to 10 servings.
Wishing you happy holidays.
And a wonderful New Year!
The following was written by Brittany Lagarde, parent of Sawyer (MPS IIIA). Originally posted on Facebook. We appreciate her permission to share her unique perspective on the holidays as a parent of a child with Sanfilippo Syndrome.
this time of year…
lots of expectations, ya know?
lots of unmet expectations, ya know?
What do you get a sweet girl for Christmas that has no idea Christmas even exists?
She can’t comprehend it.
She can’t tell me what she wants.
She can’t bake cookies with me.
She can’t sing Christmas songs (even though, she tries to make sounds when she hears music).
She doesn’t understand the man in the big red suit. She can’t really open presents without help, nor does she care.
She could careless if the house is decorated.
She can’t play out in the snow and make snowmen as her body temperature doesn’t regulate.
My sweet almost six-year-old has no comprehension of this magical time of year.
But it’s ok.
It’s ok because she’s happy watching her iPad. She’s happy when she gets snuggles.
She’s happy when you sing to her.
She’s happy jumping on her trampoline.
She’s happy when she gets to eat her favorite foods.
She’s happy when she’s with those she loves.
This time of year is full of so many romanticized traditions, but that’s not our reality.
All that matters is we still have our little girl and she’s not in pain.
Time is all we have, friends.
Treasure each day, each moment with those you love.
That’s the real meaning of the season.
Families of children with Sanfilippo Syndrome and their supporters hosted more than 50 individual fundraisers via Facebook in the week leading up to Giving Tuesday.
Donation gives children with Sanfilippo Syndrome the gift of more good days. And parents more quality time with their terminally-ill child. Plus … it may just save their lives.
A donation helps keep Carson playing baseball.
Keeps Liv laughing and smiling.
Keeps Spencer splashing in the pool.
Keeps Sadie singing her favorite songs.
Keeps Connor playing basketball and soccer.
Keeps Oliver giving hugs to everyone he meets.
Keeps Eliza playing in the backyard.
Keeps Will eating the pie he loves.
Donation helps fund promising research projects that could extend children’s quality of life, giving them and their families more good days together.The Foundation provided content such as graphics, sample posts, videos, and funny takes on trending memes to support the individual fundraisers.
“Once again our Sanfilippo community came out strong. With all 53 Cure Sanfilippo Foundation fundraisers going on for Giving Tuesday, you have helped raise over $120,000!!, said Lisa Bittner, mom of Luke (MPS IIIA), posted on her 2019 Giving Tuesday Facebook fundraiser. “That is an incredible amount, and will make an impact on moving research forward, faster.”
“We are always humbled by the love and support that our family receives not only today but everyday,” said Josephine Shamaly, mom of Ellie (MPS IIIB), on her 2019 Giving Tuesday Facebook fundraiser.
Several supporters waited until 8:00 a.m. ET on Giving Tuesday to compete for Facebook’s $7 million in matching funds. The competition for those matching funds is fierce and it will be weeks until the Foundation knows whether any of those 8:00 a.m. donations were able to snag a match.
The community of Dobbs Ferry, NY, turned out on a Saturday morning in November for the 2019 Moonball Kickball Tournament, benefiting Jacob Moon, a local child with Sanfilippo Syndrome.
The second annual Moonball again attracted support from the community for a day of family-friendly kickball, food, and other games. In addition to players, the event was supported by sponsors and volunteers who helped set up, picked up food, manned tables, organized teams, donated items, cleaned up. Students from the middle and high schools helped with the event, and the Mercy College Men’s Lacrosse team refereed the games.
One of the most touching moments of the day was high-school students and teachers organizing a special inclusive “Buddy Ball Game” so Jacob and 10 fellow special-needs friends could join in the fun. Each child was accompanied by two students who helped him/her kick the ball and guided him/her in running the bases. Because of Sanfilippo, this wouldn’t be possible for Jacob without the thoughtful inclusion and accommodation of these students.
“This was definitely one of many highlights of the day,” said Bill Moon, Jacob’s dad. “I loved this for the kids who participated and the volunteers!”
The local news station, News 12 – West Chester, featured the the 2019 Moonball Kickball Tournament.
Last year, Moonball raised $12,000, and they were hoping to surpass that this year. They were successful and raised $18,000 this year! A portion is donated to Cure Sanfilippo Foundation to help fund continued research for a treatment or cure for Sanfilippo Syndrome.
Read an article about the 2019 Moonball by local newspaper The Hudson Independent.
Learn more about Jacob and hear his family’s story about living with Sanfilippo Syndrome.
Adam Shaywitz, MD, PhD, has joined the board for Cure Sanfilippo Foundation, bringing additional scientific and treatment development expertise to the organization.
“We are absolutely thrilled to welcome Adam to the board and are grateful for his support of the Sanfilippo community over the years,” said Cure Sanfilippo Board member Valerie Byers, PhD. “His extensive experience in the drug development process for devastating rare pediatric conditions will provide the Foundation with unique and invaluable guidance as we aim to accelerate our impact in the space for children with Sanfilippo Syndrome.”
Adam received his degrees from Harvard Medical School and trained in adult medicine at Massachusetts General Hospital. He subsequently pursued a fellowship in endocrinology, diabetes, and metabolism jointly at the Beth Israel-Deaconess Medical Center and Joslin Diabetes Center where he concurrently pursued postdoctoral studies in molecular physiology.
Adam is Chief Medical Officer (CMO)-in-Residence at BridgeBio Pharma, where he currently serves as CMO for three subsidiary companies: CoA Therapeutics, Aspa Therapeutics, and Adrenas Therapeutics.
Prior to BridgeBio, he spent five years at BioMarin Pharmaceutical as an Executive Director in the Clinical Sciences group. While at BioMarin, Adam developed, designed and led natural history and clinical studies for Sanfilippo Syndrome. Additionally, he played a key role in developing a number of programs aimed at treating a broad range of diseases, including other lysosomal storage disorders. During his tenure at BioMarin, Adam also worked closely with the research and business development teams to develop and broaden the pre-clinical and clinical pipeline.
“I am honored and excited to continue working with the Sanfilippo community in their mission to identify therapies that could make a meaningful impact to patients and families suffering from this devastating disease,” said Adam Shaywitz. “In addition to the urgency and drive that Cure Sanfilippo Foundation brings to their mission, they also possess a sophisticated understanding of what it takes to deliver novel therapies to patients and a willingness to dive in and participate in this process. I am looking forward to being a part of this dynamic and passionate team.”