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5th Annual Caterina Grace Walk 2023

On Sunday October 15th we held our 5th Annual Caterina Grace Foundation Walk for Life at Eisenhower Park raising awareness and funding for the rare and devastating disease, Nemaline Myopathy. We are OVERJOYED to share this was our BEST WALK YET with nearly 500 people in attendance and raising over $40,000!!!! We are forever grateful that so many people take time out of their days once a year to join us for this cause that continues to be a beacon of hope and light for us and families affected by this disease.

A tremendous thank you to our board members – Karen Beck, Colleen Gallagher-Cavaliere, Wendy Hetson Ehrlich, and Scott Wolke. Without them the undertaking needed in planning this event would not be possible. Your commitment means the world to us.

Our INCREDIBLY GENEROUS
💎 SPONSORS
💎Chris Boyl EXIT REALTY
💎Michael Romano ROMANO&ASSOCIATES
💎 Jeffrey Alan Kiesnoski &Daniel P Raupp     Fortitude Investment Group
💎 Michael Joseph Dolan WITH PRIDE HVAC
💎 Christopher Fragala DYNAMIC DEMOLITION
💎 Mike Weil AR GLOBAL
💎 Anthony Ziniti MAP ESTATE PLANNING//OSAIC/American Portfolios
💎 Dan Finnegan and THE FINNEGAN FAMILY
💎 Joe Bilello GOLDMAN SACHS

A big thank you to Dover Caterers and Dream Events for supplying us the breakfast spread, the tents bounce house DJ and face painter and Dominick’s Italian American Deli for our lunch spread.

Those that bring the magic to our walk ✨✨
A Dream Is A Wish Parties LLC and the beautiful Royal Princesses for delighting our girls and boys with your royal presence.
Long Island Ghostbusters Angelo Antonio Gisonda and the crew for your awesome set up and contribution of the raffle PROTON pack! You guys ROCK!!
Wishes Do Come True Decor Candice Marino with your gorgeous signage helping to make our walk really POP!

ALL 80+ of our raffle donors, collectors, and wrapping perfectionists that help to make this such a STANDOUT at our event! This is a massive undertaking and we thank you for all your efforts. One year we will raffle a car away!

Our volunteers who help put on the production and match our energy and hearts to give kids a smile and bring joy and happiness to this day. They truly embody the motto- “do well by doing good.”

And YOU! Thank you for reading this post! For coming! For donating! For spreading the word about our event! We wouldn’t exist without YOU!  So thank you from the bottom of our hearts for allowing us to pour the love we have for our Angel Caterina into this cause.
As Chris Boylan says, “until a cure….”

Caterina Grace Foundation Provides $30,000 Donation to Alan Beggs Laboratory April 2023

On Friday April 14th, we had the pleasure of visiting Dr. Alan Beggs’ Laboratory at Boston Children’s Hospital and formally presenting him and his team with the $30,000 donation we raised from the Caterina Grace Walk in October 2022. Dr. Alan Beggs is the Director of the Manton Center for Orphan Disease Research @bostonchildrens and Sir Edwin & Lady Manton Professor of Pediatrics @harvardmed. Throughout his career, Dr. Beggs has led the discovery of 11 new disease genes resulting in muscle diseases and has pioneered the development of gene therapies targeting muscle myopathies. Genetic muscle diseases are caused by mutations in specific genes. The current goal for treatment is to identify a way to safely deliver a healthy copy of affected muscle gene to diseased muscle cells. Dr. Beggs current work involves using benign adeno-associated viruses or (AAVS) to deliver healthy intact genes targeting entry directly to muscle cells. MyoAAV is a new group of adeno-associated viruses (AAVs) developed by Dr. Sharif Tabebordbar that uses a modified outer protein shell of AAV, known as capsid, to deliver genetic therapies with greater efficiency and at lower doses. Early trials in mouse models have shown success in restoring strength, improving muscle function, and correcting growth, thus increasing lifespan for mice carrying the corrective gene in both Myotubular myopathy and Duchenne muscular dystrophy. This promising treatment is now currently being tested in human cells in the laboratory and has the potential for targeting treatment for other organs thereby providing a potential treatment for a wide range of genetic conditions!

Your donations mean so much and it is with such great joy, pride, and honor that we can provide funding for our late daughter’s rare muscle disease by contributing to this crucial research! Every dollar truly does count and is such a significant contribution to the hope of one day providing a normal life to those affected by horrific muscle diseases.

Our late daughter, Caterina possessed a de novo mutated copy of her ACTA1 gene resulting in the severe muscle disease – Nemaline Myopathy. This disease affects 1 in 50,000 births and 66% of children do not live past their 2nd birthday. Our foundation raises awareness and provides funding toward targeted therapies in her honor.

4th Annual Caterina Grace Walk 2022

After a COVID hiatus… We’re back!!! On Sunday October 23rd 2022, the 4th Annual Caterina Grace Walk was held at Eisenhower Park in East Meadow NY. With over 300 people in attendance, the walk raised over $30,000 to help us serve research for the study of Nemaline Myopathy. The slightly inclement weather did not rain on our parade!  This day would not have been possible without our incredible board members, Colleen Cavaliere, Karen Beck, Scott Wolke,  and Wendy Ehrlich.  A tremendous THANK YOU to everyone who came out and supported us from near and far and for all who provided incredible raffle donations.

Our DIAMOND sponsors

  • Chris Boylan Exit Realty @chris_boylan_sells
  • Michael Romano Romano & Associates Attorneys at Law
  • Mike Dolan With Pride HVAC @withpridehvac
  • Christopher Fragala Dynamic Demolition
  • Mike Weil – AR Global
  • Lon Dolber American Portfolios
  • Jeff Kiesnoski Fortitude Investments
  • Dan Finnegan and Family

Our GOLD sponsors

  • Carissa Gaylardo The Bodyologist
  • Dennis Sugrue Sugrue Contracting
  • Wendy Ehrlich and Family
  • Dean Speros and Family

Our Silver Sponsors

  • DEBMAR Media
  • The Baebler Family
  • The Corcoran Family
  • The Trimarchi Family
  • Lorraine Lods and Family
  • Synergy Wealth Strategies Jimmy Kuhn and Jim Verdi

And the two companies that donated their time, talents and services to be the sprinkles on our cake – A Dream is a Wish Parties brought their princesses and Wishes Do Come True Lawn Signs came through with a gorgeous sign and balloons to make our walk really POP!

We are so grateful to everyone for their donations, their time spent, and their love.

Welcome to the New Caterina Grace Website!

We are truly excited to launch our new website! This is a great opportunity for us to share news, information about our events, our funding for research, and most importantly our annual walk! This site provides people with an opportunity for people to register and pay online making it a seamless process for our supporters.  Check back in as we will continue to update our blog.

Visit to Boston Children’s Hospital – Dr. Alan Beggs

Two months after the birth of our third child, we decided to take a trip to Boston to visit the research lab and the team responsible for conducting studies on rare congenital myopathies. A close friend of ours at Quinnipiac University was getting married in Boston and we felt it would be the perfect opportunity to spend an extra day there and visit the hospital. The entire proceeds from our walk in November went towards a donation of $50,000 to Dr. Alan Beggs and his research lab for Nemaline Myopathy. Anthony and I spent over 2 hours talking with Dr. Alan Beggs and Genomics specialist, Dr. Casie Genetti, regarding the past present and future research of this disease as well as studies being conducted in other countries. Dr. Alan Beggs and his team are responsible for identifying 10 out of the 11 genes that cause Nemaline Myopathy. The latest 1, being discovered by a doctor he confers with in Japan. It was eye-opening to learn that Dr. Alan Beggs is only 1 of 5 doctors in the world that studies this extremely rare disease. This enforces the fact that every dollar donated provides such a tangible impact to understanding these rare diseases, what genes cause them, and how to provide treatment that can lead to a cure.

It was extremely exciting to learn that there has been a major breakthrough in identifying a potential treatment for Myotubular Myopathy. A current study is being conducted with 12 boys and is showing promise for FDA approval. Myotubular Myopathy is another rare congenital myopathy with similar symptoms as Nemaline Myopathy. Myotubular Myopathy is unique because it is an X-linked disease meaning it normally only affects males. A breakthrough in gene sequencing using CRISPR technology has showed significant promise in restoring muscle function in canines that had the Myotubular disease resulting in prolonged life. This ground-breaking discovery will change the lives for those living with this disease and gives us hope that a treatment and/or cure for the disease our daughter suffered from is in the near future.

NBC Interview

Please see our NBC video interview where Anthony and I were interviewed by NBC and we discussed our experience with St. Mary’s Children’s Hospital and their music therapist, Melissa Sandoval. We were asked as part of a brand-new program if they could record Caterina’s heartbeat and play a song along with the heartbeat. It was extremely emotional but we agreed to do it. Now we have Caterina’s heart beat recorded playing a very special song alongside of it; A Thousand Years by Christina Perri. We are forever grateful for this small piece of Caterina that is tangible and lives with us forever. This interview is also very special to us as we have all 3 of our children captured in the video.

She is here! Alessandra Grace Ziniti

In addition to working on the foundation, we had also been working on something else tremendously special to us. In August 2017, we became pregnant with our precious Ale. Every day was a struggle for 9 months to get through this pregnancy, and even now that she is here we look back and wonder how we made it through. She is certainly the light we needed and has brought an abundance of joy and happiness to our lives; however, this does not subtract the sadness of losing Caterina for each child is special, unique, and could never replace the other. Caterina and Alessandra, two little girls meant to be sisters, but not on earth at the same time. For simply existing meant the other one did not. We have found to have enough love in our hearts for all three of our precious children. Two in our arms, one forever in our hearts.

Welcome Alessandra Grace Ziniti

We want to thank you for all the love and support you have shown our family over the past year and a half. As you sat alongside us during our heartbreaking loss of our beloved Caterina, you are intimately aware of how difficult the road has been to get here. A road that has been filled with tears both happy and sad, fear, hope, faith and so so much love. For Alessandra to arrive safely in our arms is something we longed for, prayed for, and dreamed of every single day. Thank you for praying for our family as we journey through both grief and joy. We are so grateful to welcome this miracle baby girl into our lives.

With Love,
The Ziniti Family

“Somewhere over the rainbow skies are blue,
and the dreams that you dare to dream
really do come true….”

1st Annual Caterina Grace Walk for Life

Our 1st Annual Caterina Grace Walk for Life Event took place on November 18th at Belmont Lake State Park which featured a 2 mile walk around the lake. We also provided some light refreshments as well as some fun bounce house activities for the kids who participated.

This event hosted over 300 walkers and helped to raise an incredible $38,000!!! The proceeds from this event went directly to the Alan Beggs Research Lab at Boston Children’s Hospital which goes to researching targeted therapies for rare congenital myopathies. We are so grateful for those who took the time out of their day to come and join us that morning as well as everyone who donated their time, money, and services to make this event so special.

We had 26 businesses sponsor or donate their services for our 1st Walk and The Caterina Grace Foundation is eternally grateful to know such compassionate and altruistic people and businesses. Everyone’s support had a direct impact on improving the lives of other children living with rare muscle diseases as well as helping our foundation honor our beloved Caterina Grace.

Here are some of the businesses that sponsored:

St. Mary’s Children’s Hospital Tribute Dinner

On November 6th 2017, we were invited to the Annual St. Mary’s Children’s Hospital Tribute Dinner at Guastavino’s in New York City. We were asked to be the St. Mary’s key note speakers for the evening. Although incredibly difficult, we were honored to share our daughter’s story, speak about the loving care provided to them and their daughter from St. Mary’s hospital, and talk about their aspirations for the Caterina Grace Foundation.

The proceeds from the Tribute Dinner will help provide hope and healing to children and their families served by St. Mary’s Healthcare System for Children in the five boroughs of New York and beyond. St. Mary’s touches more children with special healthcare needs than any other organization in New York State through an integrated network of inpatient, home care and community programs.

To view and hear our speech please click on the link below:

https://www.youtube.com/watch?v=ywH_ueApQ9o&feature=share

Presentation of Caterina Grace Ziniti Day Proclamation

Presented by Legislator William R. Spencer of the Eighteenth District

On October 3rd at 4:00 p.m. in Hauppauge, Long Island, Legislator William R. Spencer of the Eighteenth District presented to our family with a Proclamation naming Caterina’s birthday, November 15, 2017 as Caterina Grace Ziniti Day in Suffolk County to raise awareness for Nemaline Myopathy and the Caterina Grace Foundation in recognition of the help we provide for research as we strive for therapies and ultimately a cure. We are honored and proud to be recognized by the Suffolk County Legislature as well as the citizens of Suffolk County.

It is an interesting coincidence, that Caterina’s birthday, November 15th, is also National Philanthropy Day (NPD). Philanthropy is “the love of humankind” and is a day where thousands of people around the world come together and put words into action and recognize the change that word has brought to our communities. It is a celebration of giving, volunteering, and charitable engagement. I couldn’t think of a more beautiful day to recognize Caterina, and all the people that loved her and love us. Without the generous charitable contributions of family, friends, colleagues, neighbors, business sponsorships and our communities, the Caterina Grace Foundation would not exist today. We are so fortunate and so humbled to not only be able to honor our daughter, but also to be able to help other children battling this rare illness. Thank you for keeping her memory alive in all our hearts.