Katie & Allie Buryk Research Fund

                                                                   

For donations, please select your preference:

Donate by Credit Card

Donate through PayPal

Donations by Mail or Phone:
(617) 277-4463
Checks payable to NTSAD
2001 Beacon Street, Suite 204
Boston, MA 02135

To set up annual recurring donations, please contact us at (617) 277-4463.

View list of Donors

Make a Gift in Memory of Anthony Liotta.

Anthony (Tony) Liotta of Farmingdale, New York passed away on Monday, May 2, 2022. He was 89 years old. Tony was born and raised in Rosebank, Staten Island, the son of Pasquale and Domenica Liotta and the brother of Josephine, Antoinette, Joseph, Vincent and Isadore.

He was a star athlete during the four years he attended New Dorp High School, actively participating in baseball, basketball, and football. He was a diehard New York Yankees fan and had dreams of becoming a professional baseball player. While his dream was never realized, he came close.

Tony enlisted in the US Navy during the Korean Conflict and served as a “Radioman” on the USS Des Moines. The Navy had a traveling baseball team, and Tony was chosen to try out. He was put up against Whitey Ford. He did well, but not well enough. So, it was back to the ship and “dot, dot, dash.”

After he completed his four years in the US Navy, Tony joined the New York City Fire Department. He was proud of his profession as a firefighter. His first assignment was to Engine Company 18 on 10th Street in the West Village. Later, he went to Engine 306 in Bayside, Queens. He considered himself one of the luckiest men alive because he got up every day to go to a job he loved, working side by side with his “brothers.” Food beckoned him. He enjoyed a good meal and never shirked his “kitchen detail.”

In 1963, he married Janet from Farmingdale. Together, they raised four children, Mary Katherine, Carol Ann, John, and Thomas. Tony was the dearest Dad. He gave so much. He introduced the family to camping and long, fun-packed road trips – one was a three-week cross-country trip in a 1967 Ford station wagon towing a “pop-up” camper. He coached Little League teams and showed up at everyone’s games to cheer and support. He gave us rich and unforgettable experiences.

Through the years, Tony persisted in getting his college degree and finally graduated from Hofstra University in 1976. He became active in the Hofstra Alumni group and served on the founding Board of the HOFSTRA PRIDE. His association with Hofstra nurtured his fierce dedication and support of the Hofstra Basketball Team. Until three years ago, when Parkinson’s disease impacted his mobility, he NEVER missed a game. Inclement weather was never an obstacle to attending home games. He occasionally traveled for “away games” and listened to the radio or watched games on TV when he couldn’t travel.

In 2011, Tony became a “father-in-law”; he was delighted! Carol Ann married John Crespo and John became a Hofstra B Ball fanatic, as well. It was a match made in heaven – for more than the happy couple.

Tony always has been committed to family, both immediate and extended. Everyone’s welfare was his concern. It is in that spirit that we ask in lieu of flowers, please make a donation to his grandnieces’ Katie & Allie Buryk Fund at National Tay-Sachs & Allied Diseases (NTSAD).

Make a Gift in Memory of Gloria Porras Rego.

Gloria Porras Rego, 64, passed away surrounded by her family on January 31, 2021. Gloria was known for her kindness and big heart. 

Gloria’s family meant the world to her and, in her eyes, there was nothing too great or too small to be done for ‘la familia’. She is survived by her husband, Raul, her daughter, Jennifer, Jennifer’s husband, Kenny, and their daughter, Amy, her son, Jonathan, his wife, Liz (whose sisters, Katie and Allie, are afflicted with LOTS), and their children, Eva and Gabriel, and her daughter, Kimberly.  

It is in this memory of Gloria’s generous and compassionate spirit and commitment to family that her family is asking, in lieu of flowers, for a donation to be made in her honor to the National Tay-Sachs and Allied Diseases Inc. 

Funding Late Onset Tay-Sachs Research

After being diagnosed with Late Onset Tay-Sachs disease, Katie Buryk and her family established a fund to raise money for research for a cure.  In under 4 years, support for the cause has raised enough funds to finance seven Research Grants.  Here is their story.

It has been eight years since I began trying to find out what’s wrong.
 

I first noticed in college I had trouble climbing stairs.  Since then my leg muscles have gotten weaker and weaker.  Everyday tasks have grown harder, whether dressing myself or getting up from a sitting position. Now I can’t take the subway or wear high heels.

Sometimes I fall when I'm walking. My legs just give out. And at times, some people can’t understand what I’m saying.  It is scary. I expected to be spending my 20s having fun, meeting boys and beginning a career.  Instead I’ve spent my time in pursuit of an answer.  What’s the matter with me? I visited multiple neurologists.  I underwent tests at a series of New York hospitals.  I went to the Mayo Clinic.  Finally, a good friend of my mom’s suggested genome sequencing for my entire family.  We arranged that and heartbreakingly, now we finally know. I have a rare disorder called Late Onset Tay-Sachs disease.  So does my twin sister.  My Mom and Dad are carriers and never suspected they had the recessive gene.  We’re among the fewer than 100 cases reported worldwide according to the National Tay-Sachs & Allied Diseases Association (NTSAD). 

There is no cure. 

Our bodies don't produce enough of an enzyme which, right now, has no replacement.  Infants who develop symptoms early usually die by age 2. Juveniles with symptoms pass away in their teens.  So I guess we’re lucky that at my age, we are still alive. But the disease's progression will continue.   And I have to ponder a future where swallowing might prove difficult and my mobility will be via a wheelchair. I may face a cognitive decline and mental illness.

Tay-Sachs is difficult to diagnose and seldom seen.  

There isn’t much money to finance a search for a cure and there’s no celebrity who leads telethons. It seems that pharmaceutical companies don't want to invest in a drug for a cure. Maybe there aren't enough of us to make it a profitable investment. I guess that means it’s up to me. I have decided to go public and try to raise money, awareness and mount a search for a cure.  Sure it’s for me and Allie, but it is also for infants and kids who aren't as lucky as we are.  And it’s for the families who have to embark on this difficult, sad and baffling journey. I will be giving regular posts updating my Facebook friend network about our progress. Every dollar donated will go into a family fund that is completely dedicated to research a cure. Research will cost far more and we are hoping to get the attention of the National Institutes of Health and possibly pharmaceutical companies to help with this cause. So please help and do what you can. I know we have your love and support and we appreciate it. Whatever your contribution will go to making a difference in our lives and so many other children's lives.  It offers hope. 

Thank you for helping.   Katie

Please help find a cure

Donate by Credit Card

Donate through PayPal

Donations by Mail or Phone:
(617) 277-4463
Checks payable to NTSAD
2001 Beacon Street, Suite 204
Boston, MA 02135

To set up annual recurring donations, please contact us at (617) 277-4463.

View list of Donors

 

Pendant to Fund Research

I'm very lucky to have Sam Levine as a friend for 15 years. She is a jewelry designer and has designed a necklace to support Tay - Sachs, available in 20 colors. 20% of the purchase price will go towards the Katie & Allie Buryk Research Fund.

Whether it's a gift or just for yourself, you will be helping to fund research to cure this disease.

Please check her website Auburn Jewelry she has beautiful pieces. .


 

 

Posted 11/28/2016:

Allie and I gave thanks yesterday and we do so every day for generous and caring people who have donated and continue to support our cause to find a cure. Just 2 years ago we received our diagnosis and already we have raised over $275k and funded four grants. There is so much more to do. Thank you to all our friends, family and donors who are helping us and giving us hope.

And to our dear friend, Peggy Furth, who made a significant donation to the Mayo Clinic. Her gift came with strings attached: help to find a cure for lysosomal storage disorders one of which is Tay Sachs. Two months ago the Mayo Clinic launched the lysosomal storage disease initiative and will be working with NTSAD to find a cure.

 Katie Buryk

 


 Posted 5/19/2015:

New York Times Magazine article, Why Were These Patients' Legs Week, presents the symptoms reported by both Katie and Allie, the effort to reconcile diagnoses, and an explanaition of the answer being a missing protein. "Tay-Sachs seemed very unlikely, because the patients’ parents did not belong to any of the ethnic groups — Ashkenazi Jews, French Canadians, Cajuns — that typically carry the gene." Read full article here: http://www.nytimes.com/interactive/2015/05/24/magazine/24mag-diagnosis.html?_r=0#/#6


 

Posted 5/7/2015:

On May 7, 2015 the New York Times Well blog, Think Like a Doctor, presents the symptoms reported by twin sisters, Katie and Allie Buryk. Readers are asked to figure out the diagnosis and comment. The patient history, neurological notes and blood test results are offered as clues. Read the blog entry here: http://well.blogs.nytimes.com/2015/05/07/think-like-a-doctor-taking-a-stand/?ref=health&_r=0

Almost 300 responses were made. The New York Times posted on May 8 the diagnosis being Late Onset Tay Sachs and describes how the diagnosis was made. Less than a handful of the reader's comments mentioned Late Onset Tay Sachs. Read the blog diagnosis entry here: http://well.blogs.nytimes.com//2015/05/08/think-like-a-doctor-taking-a-stand-solved/



Posted 2/26/2015:

February 28 is Rare Disease Day and I am proud to say we have helped to raise awareness of late onset Tay-Sachs and have raised $120k in 2 plus months! I continue to be amazed at the generosity of people and how many people have been reaching out to me to talk. This is helping me stay optimistic. Where there is activity, there will be a change and an outcome. We so need the cure for me, my sister and for all the other children. I am not going to stop fighting and I will not give up. It was hard for us to go public but everyone has been so kind understanding. When people hear what I have, they don't know what to say! This page says a lot about how many people are supporting us and care about helping others like us. I take this very personally since I have it and my twin has it. Please help me to share and get the word out there ! All the best xoxo Katie  

Read my mother's second Huffington Post blog here.


 

Posted 2/6/2015:

Katie and Allie's mother, Alexis, wrote a blog for the Huffington Post! Read her post here.

The Island Packet, based in South Carolina, featured an article about Katie and Allie's story. Read the article in its entirety here


 

Posted 1/15/2015:

I know I have sent or I'm about to send thank you notes to everyone who has contributed. I really don't know how to thank each and every one of you. When we started this journey, we would have never anticipated the outpouring from so many people. We are almost at my goal but we are going to keep going. Research is costly and we remain hopeful that there is a cure. Thank you all!!! Please share with friends and family so they too can help this cause.

Best, Katie


 

Posted 1/2/2015:

The fact we are just over $85,000 gives me and Allie so much hope for 2015. I know that NTSAD is preparing a request for proposals so we can decide where to spend this money for a cure. 
Read more here about Late Onset Tay-Sachs.
 
Happy New Year. Katie


 

Posted 12/19/14: 

I am so touched and so appreciate all the donations coming in for Tay-Sachs. I am so moved by the overwhelming support. We have raised over $44,000 in one week. Thank you to all my friends and family.

And please keep sharing. We need to make this our bucket challenge. We need to build awareness that anyone can be a carrier. I hope we can keep this momentum going since there are children dying from this disease. On December 7th, a toddler named Shaheer passed away from Tay-Sachs.

Research is so expensive and it's a long road ahead to a cure for this devastating illness. Because of your generosity, we are raising the goal to $100,000.

Please continue to share our story for all girls and boys and unsuspecting parents who may be carriers.

Thank you. Katie 


 

Posted 12/16/14:

I just want to thank you all from the bottom of my heart! I was scared to put my life out there yet everyone has been so warm, generous and caring. I didn't realize how many people love and care about my sister and me.  I am truly blessed to have all of you in my life supporting me and helping me raise money to find a cure. Rare diseases are difficult and a lot of people are unaware of the Tay-Sachs disease. By you sharing the link, we are building awareness and hopefully will find a cure.

All of your emails and messages have brought tears to my eyes. Thank you. Katie  

 

To help, please donate to National Tay-Sachs & Allied Diseases Association (NTSAD)

Donate Today

 

 View list of Donors to the Katie & Allie Buryk Research Fund