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.
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
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.
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.
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.
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.
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.
The Ziniti Family
“Somewhere over the rainbow skies are blue, and the dreams that you dare to dream really do come true….”
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.
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:
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.
On August 13th, 2017, the Caterina Grace Foundation presented a $27,000 check to Northwell Health Cohen Children’s Medical Center. $20,000 would be distributed to the Genetics Program led by Dr. Kenan O’Nell and $7,000 to the Chaplaincy Program. While Caterina was alive, Mom and Dad worked with Dr. Hyman and Dr. Bialer within the Genetics Department to try to obtain answers regarding Caterina’s illness. It was through extensive genetic testing – the “WES” or Whole Exome Sequencing, we would be able to identify a de novo gene mutation that caused Caterina’s horrible disease. This test is so extensive it took close to three months to obtain results. One of the main reasons we decided to contribute to the genetics department is because we truly believe that in furthering the identification and understanding of gene mutations, hospitals can better improve how they treat their patients with regards to all types of disease. Specifically, one of the major projects the Genetics Department at Northwell is working on is to understand rare cancers in young adolescents. Studies have shown that rare cancers have been linked to specific gene mutations and by knowing what these mutations are, patients are able to receive specialized treatment more rapidly, thus improving their survival rate. Cancer is a disease that unfortunately affects many families and the more we understand cancer causing genes the more equipped we are to both prevent and treat cancer in our loved ones.
The $7,000 we provided to the Chaplaincy Department was largely in part to the spiritual guidance we received from a very special man named Adrian Mazur. We met Adrian on day three of Caterina’s life. Anthony’s father, Steve, had arranged an anointing of the sick sacrament and Adrian stopped by to talk to us about it. He gave us a beautiful pink rosary to hang in Caterina’s incubator along with a picture of Mary and Jesus to hang there as well. There was something about the way he spoke that was so comforting to us and I remember on this day I was crying and thanking him for his support. He told me, “Mom, don’t cry, because the name Caterina is derived from the name Catherine and St. Catherine’s Monastery is the oldest monastery in the world and the one where the most miracles have occurred.” This encounter has stuck with me and although the miracle would not be Caterina’s healing on earth, but in heaven, we are left with the miracle that people can comfort us during the absolute worst time in our lives. Adrian went on to support us throughout Caterina’s life visiting us daily in the Neonatal ICU, saying prayers with us and her. He even visited us at St. Mary’s on one of Caterina’s first nights there. A welcoming face we saw in the door way of her room right before we had to kiss our girl goodnight. He also stayed by our sides throughout her Pediatric ICU stay and was in the room with us when she passed and went to Heaven. We are so thankful for his support and he will always hold a special place in our hearts.