3rd Annual VeronaTogether Charity Cornhole Event
March 14, 2020
On March 14th, 128 lucky participants will battle it out to be named the 3rd Annual Charity Cornhole Champion at Fred Hill Sports in Verona, NJ. This year’s benefactor will be the Alagille Syndrome Alliance (ALGSA) in honor of 5 year old Micco LaRosa and his family.
Who is the ALGSA?
The Alagille Syndrome Alliance (ALGSA) is a 501(c)(3) nonprofit patient advocacy organization for those living and dealing with Alagille Syndrome (ALGS), a rare genetic disorder affecting organ systems, skeletal, eye, and vascular systems to various degrees. The ALGSA is a small organization serving approx. 4000 individuals globally. Their programs include financial assistance for families, scientific research grant opportunities, a college scholarship, family highlight opportunities, collaborating with scientists and researchers around the world, and several easily accessible support groups for families needing advice, guidance, or just a shoulder to cry on.
Why should I be involved?
Your participation in the 2020 VeronaTogether Cornhole Tournament, inspired by a local Verona Alagille family, brings rare disease advocacy, awareness, and support to a whole new level.
“VeronaTogether’s model of starting locally to improve the greater rare disease community is a thoughtful, compelling, and intentional act of giving that nonprofit organizations like the ALGSA deem a special and rare gift. The Alagille Syndrome Alliance is grateful and humbled to be selected as Verona Together’s charity of choice for the 2020 VeronaTogether Cornhole Tournament, inspired by local Alagille family Mike, Catrina, Leo, and Mighty Micco!” says Roberta Smith, President of the ALGSA.
Mike, Catrina, Leo, and Micco LaRosa, the inspiration behind the 2020 VeronaTogether Cornhole Tournament, are a local Verona family living and dealing with Alagille Syndrome daily. Starting with an Alagille diagnosis nearly 5 years ago, Micco LaRosa and his family began an unthinkable journey with Alagille Syndrome, one that would prove medically complex and extremely challenging in nature. Like most learning of a new Alagille diagnosis, the LaRosa’s couldn’t have imagined the ups and downs they’d experience with such a rare disease.
Join VeronaTogether and the amazing Verona community as we raise awareness for those suffering from Alagille Syndrome here, and around the world.
Who is Micco LaRosa?
Alagille Syndrome is characterized as a cholestatic liver disease, however, it’s so much more than that. Some to every organ is involved, ranging from mild to severe liver and kidney disease, heart malformations, vascular problems, nutritional challenges, and the day to day ramifications of brittle bones, vitamin deficiencies, poor birth weight, failure to thrive, and more.
Micco, having severe liver disease with severe itching, brittle bones which have led to two major bone fractures, and cranial bleeding nearly ending his life in 2019, is just a normal boy despite. Like many families dealing with Alagille Syndrome, including the LaRosa’s, the family dynamic is turned upside down and on so many levels. The extreme turmoil of Alagille Syndrome affects every aspect of life from emotional to financial. Relationships, employment, and the ability to maintain stability in any manner is pushed to it’s breaking point.
Mike and Catrina, riding the “ALGS Rollercoaster”, prove everyday that rare disease voices can be strong and heard. Both active in the Verona community, Mike and Catrina are dedicated advocates raising awareness about Alagille Syndrome and the struggles of rare disease in general to Verona, New Jersey, and beyond. As small business owners, plugged-in citizens, and community volunteers giving of their time to raise awareness and funding for the American Liver Foundation and the Alagille Syndrome Alliance annually, their strength and tenacity inspires their friends, family members, and community every day.
There are no formal treatments for ALGS, only band-aids for symptoms. Currently, ALGS has one drug in the clinical trial phase used to treat the itching symptom of the cholestatic liver disease portion of Alagille Syndrome. It may be years before it’s accessible to all ALGS patients outside of the small amount of those in the clinical trial.
At this stage in clinical care, the most widely used course of action for ALGS patients includes very invasive surgeries like organ transplantation, biliary diversion, heart procedures, and more. These don’t cure the syndrome. They address one aspect of it, and only trade one set of problems for another.
“Alagille Syndrome is a rare genetic disorder that most doctors aren’t familiar with. Awareness and funding are crucial if we’re going to make progress toward treatments and eventually one day a cure. We are our son’s biggest advocates as parents, but our duty extends farther beyond that. We’re in this fight for every child and family that has to live and struggle with Alagille's. We’re grateful VeronaTogether is joining that fight.”, said Mike LaRosa, Micco’s Dad
More from ALGSA
“What the community of Verona, with VeronaTogether, is essentially doing is providing a gift to small rare disease nonprofits that normally would never receive this kind of unexpected funding.
Gifts of this nature can be used for initiatives and projects that make an impact globally, including providing the funding for research grants, programs for families, financial assistance, and general operating costs. By starting at a local level, Verona Together has realized the strength of the patient voice and experience and the power it has on a grander scale. The community of Verona has proven individuals, families, corporate leaders, and small business owners can work together to actually change the landscape of rare disease around the world, even by celebrating just one at a time. They are taking actionable steps to spread awareness and advocate instead of just talking about it.”, said ALGSA President, Roberta Smith
“It’s really inspiring to see the Verona community gather to celebrate and support not only a local Verona rare disease family, but the rare disease patient advocacy nonprofit right along with them. We hope to see other organizations emulate this model of local community giving and in-kind generosity around the world so rare disease organizations like ours have a fighting chance to see treatments, better treatments, and a cure.”, said ALGSA President, Roberta Smith.
About VeronaTogether (EIN# 84-3366359)
VeronaTogether was founded in 2018 by five Verona residents who saw both the generosity of the people of Verona as well as the rare and serious disorders affecting many in the community, particularly among children. VeronaTogether was born based on the knowledge that when asked the Verona community rises to any challenge. In March of 2020, VeronaTogether will host the 3rd Annual Charity Cornhole Tournament which the first two events have raised over $35,000 for select pediatric charities working to cure a rare disease that not only affects Verona residents but children around the world. VeronaTogether is a federally recognized 501(c)3 organization. All donations are tax deductible under applicable law.
“Making a difference, together”
VeronaTogether was founded in 2018 by five Verona residents who saw both the rare and serious disorders affecting many in the community as well as the generosity of the people of Verona, particularly among children. VeronaTogether was born based on the knowledge that when asked, the Verona community rises to any challenge. In March of 2020, VeronaTogether will host the 3rd Annual Charity Cornhole Tournament for the Alagille Syndrome Alliance. The first two events have raised over $35,000 for select pediatric charities working to cure a rare disease that not only affects Verona residents, but children around the world.
VeronaTogether was created to empower Verona and the surrounding community to raise money for causes that meaningfully affect friends and neighbors. Our belief is that even small communities like Verona can achieve more than imagined when asked to come together for a cause having an impact on a neighbor's life, particularly the lives of children.
VeronaTogether is a federally approved 501(c)(3) charitable organization run by volunteers, that raises money for other federally approved 501(c)(3) charitable organizations, that have been carefully chosen with the assistance of a local family who has been particularly affected by its work. The charities chosen by VeronaTogether typically work to cure a severe childhood medical condition and/or to make the lives of those living with the condition more manageable.
Organize fun and/or competitive events that bring the community together to share in the joy of doing good for another.
Utilize the collective power of our community through volunteerism to flawlessly execute events that maximize participation and fun.
Team Mighty Micco
3rd Annual VeronaTogether Charity Cornhole Tournament
* proceeds to be donated to The Alagille Syndrome Alliance *
"Making a difference... together."