In The News

In The News


Play Cards, Eat Food and Help Children with Rare Diseases on December 10

This holiday season, FoodieCards will be available to purchase at Franklin Park Mall. FoodieCards are a full deck of playing cards with each card serving as a $10 discount card to one of 54 dining establishments in the Toledo area. A deck of FoodieCards costs only $30 and provides $540 in savings and are good through October 2016.

Foodiecards has designated Saturday, December 10 “Cards for Carly” day. For every deck of FoodieCards purchased on December 10, $15 will go to Carly Cares.

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 is the namesake of Whitehouse resident Carly Kudzia, 6, who was diagnosed with progeria, an accelerated aging disease, in April 2011. Her condition is extremely rare. Carly is one of only 18 known cases in the US, and the second in the Toledo area. There are currently 103 children known to be living with progeria worldwide.

“Due to the generosity of the people of Northwest Ohio and businesses like FoodieCards, who have so graciously let Carly into their hearts, this past year we have been able to partner with the Progeria Research Foundation to co-fund a second two-year research grant through the Progeria Research Foundation’s Medical Research Grant Program. Carly Cares is also offering grants for progeria families to offset unforeseen costs associated with participating in clinical trials and diagnosis. Generous fundraisers like this one will help us continue our work” said, Carly Cares President and Carly’s mother, Heather Kudzia.FoodieCards are being sold at the Kiosk located directly in front of Godiva. Carly will stop by the kiosk to thank and visit patrons at 11:30.

To learn more about Carly please visit www.teamCarlyQ.com. More information on FoodieCards can be found at www.foodiecards.com

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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

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November 10, 2016

For Immediate Release 

CARLY CARES PARTNERS WITH THE PROGERIA RESEARCH FOUNDATION TO FUND A PROGERIA RESEARCH GRANT

 

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 Cares

Carly 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

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6TH ANNUAL “CARLY’S PARTY – FOR THE CURE!” SEPTEMBER 23

At the Pinnacle, 1772 Indian Wood Cir., Maumee OH

CONTACT: Kerri Rochellle
419-936-0638

kerri@carlycares.org

                    September 09, 2016

FOR IMMEDIATE RELEASE

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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.

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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.

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We’ve added a new easy way to donate to Carly Cares — Amazon Smile!!!

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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 Workshop

Dr. 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.

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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”

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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

 

 




 

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CONTACT: Kerri Rochellle
419-936-0638

kerri@carlycares.org

                    September 10, 2015

                                                                FOR IMMEDIATE RELEASE

5TH ANNUAL “CARLY’S PARTY – FOR THE CURE!” SEPTEMBER 18

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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.




 

 

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CONTACT: Kerri Rochellle
419-936-0638

kerri@carlycares.org

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                  July 30, 2015

  FOR IMMEDIATE RELEASE

CARLY CARES, A LOCAL NON-PROFIT, FUNDING TRANSPORTATION FOR 12 FAMILIES TO PAUL NEWMAN’S HOLE IN THE WALL GANG CAMP

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




 

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CONTACT: Kerri Rochellle
419-936-0638. kerri@carlycares.org

                        July 30, 2015

FOR IMMEDIATE RELEASE

CARLY CARES PARTNERS WITH PROGERIA RESEARCH FOUNDATION TO FUND A PROGERIA RESEARCH GRANT

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.

IMG_4440a About Carly Cares
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 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.