Local girl fights rare condition that speeds aging
Toledo (The Blade), October 15, 2018 – Eight years ago Carly Kudzia of Swanton was diagnosed with a rare genetic condition known as progeria, which is characterized by accelerated aging in children.
The condition is so rare that about 150 people throughout the world have progeria, according to the Progeria Research Foundation. In the U.S., fewer than 20 people have the genetic condition — Carly, as well as Kaylee Halko, 15, of Monclova Township, included. One in 20 million have the condition.
While there is not a cure for progeria, the Toledo-based 501C3 nonprofit organization Carly Cares has supported families and research of rare diseases since 2013.
“Our mission statement is to support families who are fighting rare diseases as well as the researchers working for the cure,” said Heather Unsinger, Carly’s mother.
The organization will host its eighth annual Carly’s Party For The Cure fund-raising benefit that will start at 7 p.m. Friday at The Pinnacle, 1772 Indian Wood Circle in Maumee. Tickets can be purchased at www.carlytickets.com. The money raised will be used for research of rare diseases and support for families.
Carly Kudzia, 8, does what most other kids her age do. She is a third-grade student at Lial Catholic School in Whitehouse. She’s involved in two different dance classes and the Girl Scouts. Yet, standing at 37 inches tall and weighing 27 pounds, she has to deal with the effects of progeria every day.
“She’s a very bright girl,” Ms. Unsinger said. “She’s very active, funny, and smart.”
The rare, fatal genetic conditioned, also known as Hutchinson-Gilford Progeria Syndrome, is characterized by an accelerated aging in children and is caused by a mutation in the gene LMNA, which produces the Lamin A protein that is the structural scaffolding that holds the nucleus of a cell together. The mutation in the gene causes the nucleus to become unstable and leads to premature aging.
The average lifespan of those with progeria is 14.6 years. Noticeable signs of accelerated aging typically appear during the child’s first two years of life, including growth issues, loss of hair and body fat, aged-looking skin, stiffness of joints, and hip dislocation. Cardiovascular disease and stroke is common between the ages of 10 and 14.
Dr. Ateeq Haseeb, a pediatric neurologist at Mercy Health St. Vincent Medical Center, said intellectual function and cognitive development are normal for children with progeria. He said children with progeria need to have regular check-ups with their cardiologist, dentist, and otolaryngolost because of how quickly their bodies age.
While two children live in the Toledo area with the genetic condition, Dr. Haseeb said it’s a coincidence. The disease isn’t hereditary, either.
“This is a spontaneous mutation,” Dr. Haseeb said.
While the Progeria Research Foundation has been raising awareness in the U.S. since 1999, the organization is still trying to educate people in other countries.
Meryl Fink, executive director and president of the Progeria Research Foundation, said the foundation is able to find about five to seven new children each year with progeria, as well as a number who pass away from the condition. She said there are an estimated 350-400 people throughout the world who could have progeria, which the organization has based on the world’s population and the statistic of one in 20 million who have progeria.
Ms. Fink said it’s more difficult to find people in other countries who have the rare condition, one factor being cultural differences.
“If you had something wrong with you, your doctor will refer you to a specialist and in this country we assume they’ll get to the bottom of it. That’s because one of those doctors along the way will likely have heard of progeria. That’s not true the world over,” Ms. Fink said. “Children around the world who have cultural differences who are born with issues, their culture doesn’t embrace that and they may be shunned or the parents may not be encouraged to seek help or information. There are parts of this world where it is so remote they may not be able to get to the doctor that has the knowledge.”
Ms. Unsinger, Carly’s mother, said the Carly Cares nonprofit donates funds to the Progeria Research Foundation every year, such as a medical grant for research studies.
“We want this money from northwest Ohio and southeast Michigan to go directly to this grant we believe in. We want to fund it,” she said. “We’ve got the research grants we funded to date and they are all a variation of research that we need to take us to the next step in the fight against progeria.”
In 2015, Carly Cares funded travel for 12 families living with progeria to attend the first U.S. progeria reunion to connect with others for four days; in 2016 the organization funded a $100,000 grant with the Progeria Research Foundation for a team in Brazil investigating the neuropeptide Y system as a strategy for the therapeutics of progeria; and in 2017 Carly Cares partnered with the Progeria Research Foundation to co-fund a medical research grant for an Austria-based doctor to investigate how protein damages blood vessels and how it affects heart function.
“When Carly was first diagnosed at 10 months I was hell-bent on helping everyone find a cure by age 3 … like, ‘We’re going to find a cure, let’s do it!’ Now she is 8 and knowing the life expectancy is different with kids with progeria your mindset changes a little,” Ms. Unsinger said. “Clearly we’re still doing things to find a cure, but there are a lot of gaps that need support in the meantime like for right now. I don’t have a cure, what can we do for them today?”
Today, Ms. Unsinger is hopeful to eventually help find a cure.
“I do think it’s close, but I couldn’t tell you if close is five years or two years or 10 years; I really hope it’s two,” she said.
The benefit will include a performance by Toledo Top 40 cover band Noisy Neighbors, as well as a silent auction, raffle baskets, 50/50 raffle, and food served.
Family, friends of local girl with rare genetic disorder host big party to help other families
Whitehouse (13abc Action News) – There are less than 150 children worldwide living with Progeria, also known as the rapid aging disease. Carly Kudzia of Whitehouse is one of them. Her family and friends get together every year for a big celebration to raise money for research and to help other children living with the disease.
It’s called Carly’s Party for the Cure. Carly Kudzia has no shortage of energy. We caught up with her on the playground at Lial Catholic School today, “I am 7, and I am in the second grade.” As usual, she gave me a run for my money in our annual race, “I beat you again!”
Carly is one of only 17 children in the United States with Progeria, a rare genetic disorder that accelerates the aging process in children.
Heather Unsinger is her mom,”We lose our Progeria kids to heart disease and stroke just like the aging population. We don’t have a cure but there are a lot of treatments to help keep the cardiovascular system as healthy as we can.”
Carly is part of a treatment trial in Boston, she’s now in the second phase of it, “We won’t know if it is helping until the end of the trial because they have done baselines and they will go back and compare.”
The trial wraps up next spring, and that research is critical. But Heather says so is getting Progeria families together for an annual camp, “We are doing whatever we can to fund research for a cure but we also have to hedge our bets a bit and balance that goal with right now and what we can do today for families to make an impact.”
One of the ways the Carly Cares Charitable Foundation has done that is to cover travel expenses for families attending the Progeria Family Weekend at the Hole in the Wall Gang Camp in Connecticut. Carly and Heather are just home from camp, “My favorite thing was arts and crafts. I climbed the rock wall too and I did the zip line all by myself.” Carly is not alone when it comes to her fight against Progeria. She has an entire army of family and friends on the front lines with her.
Carly’s party for the Cure is this Friday night at The Pinnacle in Maumee. Doors open at 7. Tickets are $30 in advance and $35 at the door. Last year the event raised $100,000. The goal is to do that again this year.
Family, friends of local girl with rare genetic disorder host big party to help other families
7th Annual ‘Carly’s Party’ to be Held September 29
TOLEDO, OHIO – On Friday, September 29, local nonprofit organization, Carly Cares, will hold the 7th Annual Carly’s Party – for the Cure! to benefit children with rare genetic diseases, including Hutchinson-Gilford Progeria.
Guests of Carly’s Party will enjoy local band, The Bridges, to entertain throughout the evening. Carly’s Party will also feature exciting silent auction items such as tickets to Disney World, autographed Cleveland Cavaliers memorabilia, vacation rentals, a mountain bike, and tickets to sporting events. The event will be held at The Pinnacle at 1772 Indian Wood Circle in Maumee. The event will run from 7:00 p.m. to 11:00 p.m.
Progeria is a very rare, fatal, genetic condition characterized by accelerated aging. Although kids with Progeria are born looking healthy, by the first few months of age they begin to display signs of growth failure, loss of body fat and hair, aged skin, stiffness of joints, hip dislocation, and atherosclerosis /cardiovascular disease. All children with Progeria die of the same heart disease that affects millions of normal aging adults (arteriosclerosis), but instead of occurring at 60 or 70 years of age, these children may suffer strokes and heart attacks even before age 10.
Since Carly Cares was formed in 2013, the organization has been devoted to raising funds to support children with rare genetic diseases and their families. “Children with Progeria periodically need to travel for medical treatment and surgery. This means that parents often have to take off work and incur travel and lodging expenses- adding a financial burden to a stressful time,” said Carly Cares board member, Carrie Johnson. “Thanks to the generosity of our donors, this year we were able to offer grants to families who need to travel for medical issues. The families have responded with overwhelming appreciation and gratitude!”
Another focus of Carly Cares is to fund research for rare genetic diseases, with a focus on Progeria. “Carly Cares, in partnership with The Progeria Research Foundation, has funded two medical research grants thanks to our generous donors totaling $175,000 and we hope to raise enough to fund another researcher this year. We are considering six exciting research grant proposals for potential funding this year,” explained Carly Cares Board member, Greg Johnson.
“It’s hard to believe that Carly is 7, and that we are in our 7th year of Carly’s Party – for the Cure!” said Heather Unsinger, Carly’s mother. “So much living, loving and growing has happened over the past 7 years. Together with our community, we’ve helped to fuel research & innovation, and most importantly, to really touch progeria families. It’s been an incredible ride so far, and we’ve got so much more to accomplish!”
Tickets for 7th Annual Carly’s Party – for the Cure! are available at carlycares.org/events. Sponsorship opportunities are available – for more information e-mail [email protected]. People can donate by visiting carlycares.org/donate.
About Carly Cares: In 2011, 10 month old Carly was diagnosed with Hutchinson-Gilford Progeria, becoming the 80th known child living with Progeria in the world. Remarkably, Carly is one of two children in the greater Toledo area with Progeria. To maximize the impact on the lives of these children and others, in 2013, Carly Cares, a Toledo-based 501(c)(3) non-profit corporation was formed to support families and research of rare diseases, including Progeria. Carly Cares’ mission is to benefit children with rare genetic diseases, including Hutchinson-Gilford Progeria. Carly Cares’ focus is on raising funds to support Progeria related research.
CARLY CARES Joins the Global #GivingTuesday Movement
Pledges to Raise Dollars For “Travel to Treatment”
TOLEDO, OHIO, November 15, 2016 – CARLY CARES has joined #GivingTuesday, a global day of giving that harnesses the collective power of individuals, communities and organizations to encourage philanthropy and to celebrate generosity worldwide. “TRAVEL FOR TREATMENT” will offer grants to families to supplement travel expenses for treatment of the rare genetic disease Progeria by doctors outside of their local area.
Occurring this year on November 29, #GivingTuesday is held annually on the Tuesday after Thanksgiving (in the U.S.) and the widely recognized shopping events Black Friday and Cyber Monday to kick-off the holiday giving season and inspire people to collaborate in improving their local communities and to give back in impactful ways to the charities and causes they support.
“We are so excited to participate in our first #GivingTuesday! Progeria is an extremely rare genetic condition, and treatment facilities are usually thousands of miles away for families. With the dollars we raise on #GivingTuesday we will offer families travel grants to supplement expenses and make the experience more comfortable, states Heather Kudzia, President of Carly Cares and mother of six-year-old Carly Kudzia, a child with Progeria for whom the organization is named.
Those who are interested in joining CARLY CARES #GivingTuesday initiative can visit
https://www.facebook.com/TeamCarlyQ/
About #GivingTuesday
#GivingTuesday inspires people to take collaborative action to improve their local communities, give back in better, smarter ways to the charities and causes they celebrate and help create a better world. #GivingTuesday harnesses the power of social media to create a global movement dedicated to giving around the world. To learn more about #GivingTuesday participants and activities or to join the celebration of giving, please visit: www.givingtuesday.org
Carly Cares is partnering with The Progeria Research Foundation (PRF) to co-fund a two-year research grant through PRF’s Medical Research Grant Program. The funding will support Dr. Roland Foisner, Professor of Biochemistry at the Medical University of Vienna, Austria and Deputy Director of the Max F. Perutz Laboratories (MFPL) in Vienna, Austria. The MFPL is a research center established by the University of Vienna and Medical University of Vienna. His project is entitled “Contribution of endothelial cell dysfunction to cardiovascular disease in progeria and implications for diagnostic and therapeutic targets” Hutchinson-Gilford Progeria Syndrome (“Progeria”) is caused by a genetic mutation that produces an abnormal protein called progerin. Progerin makes cells unstable leading to the process of premature aging in Progeria. Dr. Foisner and his team will be investigating how progerin damages blood vessels and how it affects heart function.
“We are thrilled to continue our partnership with Carly Cares in our vital research grant program”, states Meryl Fink, Executive Director of PRF. “Since 1999, PRF has funded Progeria-related projects conducted in 13 countries throughout the world. This research has led to crucial discoveries about Progeria, heart disease, and aging. Our partnership with Carly Cares allows innovative new research in Progeria to continue to thrive and give the world ever-increasing hope for treatments and a cure.”
Progeria is an extremely rare genetic condition with features of premature and accelerated aging. All children with Progeria die of the same heart disease affecting millions of normal aging adults (arteriosclerosis), but instead of occurring at 60 or 70 years of age, children with Progeria may experience strokes and heart attacks before the age of 10 years. The intellect of children with Progeria is unaffected, and despite physical changes in their young bodies, these remarkable children are intelligent, courageous, and full of life.
“We could not be prouder to help fund this grant,” said Heather Kudzia, President of Carly Cares and mother of six year old Carly Kudzia, a child with Progeria for whom the organization is named. “Carly Cares exists for this very purpose – to raise money to fund research that will extend lives and positively impact the children and their families. We look forward to working even harder, with the amazing support of our community, to continue to fund future research.”
About Carly CaresCarly Cares is a 501(c)(3) non-profit organization whose mission is to support children and families suffering from rare genetic diseases including Progeria, and the medical researchers who fight these diseases. Carly Cares, and its army of volunteers known as “Team Carly Q”, hold several fundraising events each year and have funded medical grants, a national reunion for Progeria families and lodging for extended medical visits. Carly Cares is focused on growing the awareness and local rare disease research in NW Ohio/SE Michigan. For more information about Carly Cares or to make a donation, please visit www.CarlyCares.org or www.teamCarlyQ.com.
About The Progeria Research Foundation (PRF)The Progeria Research Foundation (PRF) was established in 1999 to find the cause, treatment and cure for Progeria – a rapid aging disease that causes children to die from heart disease or stroke at an average age of 14 years. In the past 17 years, research funded by PRF has identified the gene mutation that causes Progeria, and the first-ever drug treatment for children with Progeria. PRF continues to identify more children worldwide who can benefit from the programs and services that it provides, while helping advance research towards treatments and cure. To learn more about Progeria and what you can do to help, please visit www.progeriaresearch.org.
Party for local girl to raise money to find a cure for rare, genetic disorder
WHITEHOUSE, Ohio (13abc Action News) – A fundraiser this week will raise tens of thousands of dollars to help fight Progeria, also called the rapid aging disease.The 6th annual Carly’s Party for the Cure is Friday night.
We’ve been sharing the story of Carly and her family with you for the last five years. The party they host every year has raised a lot of money to fight the rare, genetic disorder. The hope is that the event will help find a cure in Carly’s lifetime.
Like most kids her age, Carly loves to play. She spends a lot of time on her jungle gym, riding her bike and winning races.She’s doing well in school “How old are you Carly? 6. What grade are you in? 1st.I go to Lial Catholic School.” And she has a favorite class, “Math is your favorite subject? Yes! What’s one plus one? Two. What’s 5 plus one? 6. Four plus two? 6, Of course!”
Carly was diagnosed with Progeria in 2011 There are only 18 known cases in America and 130 worldwide. Her mother Heather says she’s taking part in a new drug trial,”She ages 8-10 years for every year she is alive. She’s six so you can imagine how she feels. Sometimes she has stiffness in her hands and her legs get tired. Her school is great. They make accommodations for her, like making sure she is not carrying heavy books or walking long distances.”
Carly’s Party for the Cure raises money for Carly Cares. It’s a non-profit the Kudzia family started to fund research that could one day unlock the mystery of Progeria and to help others living with the disease. In addition to making donations to the Progeria Research Foundation they also hosted a camp for Progeria families, “Six years ago our goal was to get a cure, but I am a realist and I don’t know if it will happen in her lifetime. I think it could and I hope so. In the meantime, our mission is to help other families with Progeria and to live like crazy.”
Heather says the hope is to also host a rare disease workshop here in Northwest Ohio, “Progeria is not a huge population, but there are other similar rare diseases that attack the same pathways or genetic mutations.We hope to have a workshop here.We would also like to have some of the research that is being done moved to our area.”
One family’s quest to find a cure and help others along the way, “I truly believe everybody is here for a purpose.My purpose is to help impact children and their families with rare diseases like Progeria. Carly’s purpose is to touch people in our community and she’s certainly doing that.”
Carly’s party for the Cure is Friday night at The Pinnacle in Maumee. Doors open at 7.There will be music, a raffle and silent auction. Tickets are $30 in advance and $35 at the door. We’ve posted a link.
The hope is to raise about $75,000. Once again, it will all go to research and programs to help children with Progeria and their families.
To watch the interview with Carly and Heather click here
6TH ANNUAL “CARLY’S PARTY – FOR THE CURE!” SEPTEMBER 23
The Pinnacle will host the 6th Annual Carly’s Party for the Cure, an event to raise funds for Progeria research on Friday, September 23 beginning at 7 p.m. In 2011, Party hostess and six year-old Carly Kudzia was diagnosed with Progeria, an accelerated aging disease. Progeria is extremely rare, affecting one in 8 Million births. There are only 18 known cases in the US and 130 globally.
Immediately upon Carly’s diagnosis in 2011, the Kudzia family, along with extended family and friends known as “Team Carly Q”, began raising money to support medical research to benefit Progeria patients, including an annual fundraising event titled Carly’s Party – for the Cure! Music will be provided by D.J. Word of Mouth. Radio personalities Harvey Steele and Becky Shock will be on-hand to emcee and countless donors have provided silent auction and raffle prizes. Tickets for the 21 and over event are $30 presale and available a TeamCarlyQ Events or $35 at the door. The casual event promises to be a night you won’t want to miss!
Team Carly-Q and its fundraising efforts have grown to the point that the group’s leaders decided to create Carly Cares, a 501(c)(3) non-profit organization whose mission is to fund medical research for rare genetic diseases and to support children and families suffering from rare diseases including Progeria.
“This has been a big year for Carly Cares. Due to the generosity of the people in Northwest Ohio, Carly Cares and Team Carly-Q have grown exponentially and reached many of our goals, yet there is more to accomplish. Our plans to unite all 18 US children in 2017 and fund a rare disease workshop here in the Toledo area are just two of the many important initiatives we would like to implement,” said, Carly Cares President and Carly’s mother, Heather Kudzia.
This year, Carly Cares and Team Carly Q hope to match the success of last year’s event, raising an incredible $75,000
August 23, 2016 – Lock it Up Storage is sponsoring a billboard for Carly’s “Save the Date” event on the corner of Talmadge and Sylvania roads. Drive by and check it out!
Carly’s annual party for a cure is September 23rd, 2016 at the Pinnacle, Maumee OH. Tickets are available here.
June 9th, 2016 – K100’s London Mitchell interviewed Carly and Heather Kudzia for his “Contact” show for this Sunday morning. They dropped by Loma Linda Restaurant to talk about Progeria and how you can show your support for Carly Q and celebrate Loma Linda’s 61st anniversary with Carly Month the entire month of June! All kids menu proceeds on Wednesdays went to Carly Cares. Listen to the the interview with Heather here.
We’ve added a new easy way to donate to Carly Cares — Amazon Smile!!!
Amazon will contribute a percentage of every purchase you make to Carly Cares whenever you use http://smile.amazon.com. It’s easy, just go to smile.amazon.com and the first time Amazon will ask you what charity you would like. Just type in “Carly Cares Corp” and your done. After that every time you use http://smile.amazon.com you’ll automatically be donating to Carly Cares on every qualified purchase!!!
Detailed directions can be found at: http://www.worldofchildren.org/how-to-use-amazon-smile/
Carly Cares sponsors Progeria Research Workshop
Carly Cares was one of the sponsors of the 8th Progeria International Scientific Workshop held on May 2-4th in Cambridge, MA. Heather, Carly, Ryan and Greg Johnson along two other families with Progeria kids attended the workshop where researchers presented over 60 papers focused on Progeria research.
Carly Cares sponsors Progeria Scientific WorkshopDr. Cavadas, from the the University of Coimbra, Portugal presented a paper titled “NPY reverts HGPS phenotype” at the workshop showing preliminary Progeria research results. Carly Cares is funding Dr. Cavadas and her team who are conducting research in conjunction with the Progeria Research Foundation.
Carly and Heather are featured in full page “Miracles in Focus” donation ad sponsored by Children’s Miracle Network Hospitals which was placed in the U.S. News and World Report annual “Best Hospitals” issue.
Link to Children’s Miracle Network “Miracles in Focus”
Carly Cares funded transportation for 12 children with Progeria and their families to Ashford, Connecticut to attend a three-day experience at the Hole in the Wall Gang Camp this summer.
See the Press Release for the camp and link to photos from the event below:
Follow this link to see pictures from the “Hole in the Wall Gang” event
5TH ANNUAL “CARLY’S PARTY – FOR THE CURE!” SEPTEMBER 18
The Pinnacle will host the 5th Annual Carly’s Party for the Cure an event to raise funds for Progeria research on Friday, September 18. In 2011, Party hostess and five year-old Carly Kudzia was diagnosed with Progeria, an accelerated aging disease. Progeria is extremely rare, affect-ing one in 8 Million births. There are only 18 known cases in the US and 130 globally.
Immediately upon Carly’s diagnosis in 2011, the Kudzia family, along with extended family and friends known as “Team Carly Q”, began raising money to support medical research to benefit Progeria patients, including an annual fundraising event titled Carly’s Party – for the Cure! This year, Carly’s Party will feature live music from 56 DAZE. Radio personalities Harvey Steele and Becky Shock will be on-hand to emcee and countless donors have provided silent auction and raffle prizes. Tickets for the 21 and over event are $30 presale and available at TeamCarlyQ Events or $35 at the door. The casual event prom-ises to be a night you won’t want to miss!
Team Carly-Q and its fundraising efforts have grown to the point that the group’s leaders decided to create Carly Cares, a 501(c)(3) non-profit organization whose mission is to fund medical re-search for rare genetic diseases and to support children and families suffering from rare diseases including Progeria.
“This has been a big year for Carly Cares. Due to the generosity of the people in Northwest Ohio who have so graciously let Carly into their hearts, we have been able to partner with the Progeria Research Foundation to co-fund a two-year research grant through the Progeria Research Foun-dation’s Medical Research Grant Program. Carly Cares also funded transportation for 12 children with Progeria and their families to attend the first U.S. Progeria Family Reunion at Paul New-man’s Hole at the Wall Gang Camp in Connecticut,’ said, Carly Cares President and Carly’s moth-er, Heather Kudzia.
This year, Carly Cares and Team Carly Q aim to raise an unprecedented $70,000 at Carly’s Party for the Cure, $5,000 more than the $65,000 generated last year.
Carly Cares is funding transportation for 12 children with Progeria and their families to Ashford, Connecticut to attend a three-day experience at the Hole in the Wall Gang Camp this summer. Carly Kudzia, a Whitehouse resident diagnosed with Progeria, will travel with her family to the camp on August 27 to lend support, share experiences, and unwind and have some fun with the other families.
Progeria is a rare disorder affecting one in 8-Million births. There are only 18 known cases in the US and 104 globally. “The other families living with Progeria have become extended family to us. We share trials and triumphs. It is always comforting to spend time with others who truly understand what Carly experiences every day,” said Heather Kudzia, Carly Cares president and mother to the foundation’s 5-year-old namesake.
The Hole in the Wall Gang Camp was founded in 1988 by Paul Newman to give every child, no matter their illness, a fun-filled experience full of comradery, compassion, and acceptance, free of charge. The Hole in the Wall Gang Camp celebrates friendship and the spirit of childhood and provides a unique healing experience to kids in need and their families. Camp activities include horseback riding, archery, sports and recreation, swimming, boating, fishing, theater arts, music, tennis, miniature golf, arts and crafts, adventure and high-ropes, and woodworking.
Carly Cares is a 501(c)(3) non-profit organization whose mission is to support children and families suffering from rare diseases including Progeria, and the medical researchers who fight these diseases. Carly Cares, and its army of volunteers known as “Team Carly Q”, holds several fundraising events each year. Its largest fundraiser, the 5th Annual Carly’s Party—for the Cure!, is on Friday, September 18, 2015 at the Pinnacle in Maumee, Ohio. For information about purchasing tickets or sponsoring Carly’s Party, visit TeamCarlyQ.
Click here to see a slide show of Hole in the Wall Gang Kids
Carly Cares is partnering with The Progeria Research Foundation (PRF) to co-fund a two-year research grant through PRF’s Medical Research Grant Program. The funding will support Dr. Claudia Cavadas, for her project entitled, “Peripheral NPY reverts HGPS phenotype: a study in human fibroblasts and mouse model” at the Center for Neuroscience and Cell Biology at the University of Coimbra, Portugal. Dr. Cavadas and her team will be investigating the potential of using Neuropeptide Y (NPY) system activation as a candidate strategy for therapeutic treatment of Hutchinson-Gilford Progeria Syndrome (Progeria). NPY activates NPY receptors that have relevant beneficial functions in various organs and cells affected by Progeria. Previous studies suggest that NPY may play a role as an aging regulator.
“We are thrilled to partner with Carly Cares in our vital research grant program”, states Audrey Gordon, Executive Director of PRF, “PRF has funded projects throughout the world that have led to important discoveries about Progeria, heart disease, and aging. Partnerships such as this will allow innovative new research in Progeria to continue to thrive.”
Progeria is an extremely rare genetic condition with features of premature and accelerated aging. All children with Progeria die of the same heart disease affecting millions of normal aging adults (arteriosclerosis), but instead of occurring at 60 or 70 years of age, Progeria children may experience strokes and heart attacks before age 10. The intellect of children with Progeria is unaffected, and despite startling physical changes in their young bodies, these remarkable children are intelligent, courageous, and full of life.
“This is what it is all about. This is why we do what we do. Carly Cares exists for this very purpose – to raise money to fund research, research that will extend lives and positively impact families. We could not be prouder to help fund this grant and look forward to working even harder, with the amazing support of our community, to continue to fund future research,” said Heather Kudzia, President of Carly Cares and mother to whom the organization is named for and Progeria patient, five year old Carly Kudzia.
About Carly CaresCarly Cares is a 501(c)(3) non-profit organization whose mission is to support children and families suffering from rare diseases including Progeria, and the medical researchers who fight these diseases. Carly Cares, and its army of volunteers known as “Team Carly Q”, holds several fundraising events each year. Its largest fundraiser, the 5th Annual Carly’s Party—for the Cure!, is on Friday, September 18, 2015 at the Pinnacle in Maumee, Ohio. For information about purchasing tickets or sponsoring Carly’s Party, visit www.teamCarlyQ.com.
About The Progeria Research Foundation (PRF)
The Progeria Research Foundation (PRF) was established in 1999 to find the cause, treatment and cure for Progeria – a rapid aging disease that causes children to die from heart disease or stroke at an average age of 14 years. In the past 15 years, research conducted in partnership with PRF has identified the gene that causes Progeria, and the first-ever drug treatment. PRF continues to identify more children who can benefit from the programs and services that it provides while helping advance research towards treatment and cure. To learn more about Progeria and what you can do to help, please visit www.progeriaresearch.org.
Events
October 19th, 2018
8th Annual Carly’s Party – for the Cure!
The Pinnacle, Maumee, OH
December 10th, 2016
Foodiecards “Cards for Carly” day
Play Cards, Eat Food and Help Children with Rare Diseases on December 10
December 10th, 2016
Hot Chocolate Stand for Carly!
Zingo’s Mediterranean Restaurant, 106 Louisiana Ave., Perrysburg, OH
In the News!
December 10th, 2016
Foodiecards “Cards for Carly” day
Play Cards, Eat Food and Help Children with Rare Diseases on December 10
29th, 2016
#Giving Tuesday to Raise Dollars For “Travel to Treatment”
September 21st, 2016
Party for local girl to raise money to find a cure for rare, genetic disorder
Listen to interview with Heather and Carly on 13abc Action News
May 25th, 2016
Carly and Heather featured on NPR’s “Roughly Draft Diaires”
September 16th, 2015
Carly Featured on Toledo channel 13 News
“Carly Featured on Toledo channel 13 News”
September 15th, 2015
Carly Featured in Children’s Miracle Network ad in US News and World Report
“Carly Featured in Children’s Miracle Network ad in US News and World Report”
August 27th-31st, 2015
US Progeria Reunion for Families
“US Progeria Reunion for Families at Hole in Wall Gang”
September 2nd, 2015
Cards for Carly
“Cards for Carly Fund Raiser Sept. 2nd “
August 12th, 2015
Freeze Daddy’s Progeria Fundraiser and Car Show
“Progeria Fundraiser with Car Show “
July 30th, 2015
Carly Cares to Fund Research Grant
“Carly Cares Partners with Progeria Research Foundation to Fund a Progeria Research Grant “
September 23rd, 2014
Carly and Heather on ABC News – 2014
“Carly and Heather on ABC News – 2014”
May, 2014
Children’s Miracle Network
“Carly Announced as Ohio’s Champion Child for Children’s Miracle Network”
September 20th, 2012
Toledo Free Press
“Families, community rally around girls with rare disease”
November 10th, 2011
WKYC
“Progeria study may help find “fountain of youth”
August 3rd, 2011
WKYC
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