- About Progeria
- About PRF
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You are the driving force behind our ability to fund research and educate the families, their doctors and the general public. With your help we can achieve new heights and envision a better future for children with Progeria.
PRF relies on its volunteers to help spread the word and raise funds for medical research. With the exception of a small staff of eight, everyone involved with PRF, including its Board of Directors, Committee members, Corporate Officers, etc. generously give their time, energy and talents to PRF for free so that we can spend less on administrative costs and more on raising awareness and finding a cure for Progeria. Come join our growing team of Miracle Makers and volunteers!
Here are some ideas for youth and student fundraisers:
Corporate and Adult fundraisers can join the fun too:
We will give you all the support you need - A supply of newsletters and/or brochures, and lots of moral support! Of course you are free to develop one of your own creative ideas into a fundraiser, as many of our Miracle Makers have done.
Now that you’re ready to hold an event, please review our Fundraising Policies.
Please contact our office for additional information and guidance. – Thank you for joining our team!
Submit your fundraising event
If you have any questions, please email email@example.com. Thank you again!
Selfie with Zoey
We are so pleased to introduce you to Julia. She is one of our many dedicated, enthusiastic, fun and creative volunteers! Here is a beautiful note from Phyllis Falcone, Nathan and Bennett’s mom and founder of Fighting for Their Future.
“When we first met Julia a little over a year ago, she was doing a research paper. Being a parent of children with a disease so rare, we have been contacted on numerous occasions by students wanting to do school reports on Progeria. I am terrible about getting back to people so Julia was forced to be persistent and we are so glad she kept calling!
We finally arranged a meeting and Julia was very quiet when her parents dropped her off at our house. Being quiet is typical behavior for a sixteen year old at a stranger’s house but what followed was anything but typical. We thought the meeting at our house would be the last we saw of Miss Julia. Yes, she said she wanted to volunteer with fundraising for PRF but often people do not know how to help or get busy with other things. Little did we know that Julia was very serious about her commitment and not your typical teenager.
In the past year and a half, Miss Julia (as our kids call her) has done some amazing things! She raised $1000 at her Sweet 16 birthday party, organized a dance party for her high school friends which raised $3000, made and sold hair accessories with proceeds going to PRF, volunteered at all of our fundraisers and most recently organized and held the first Walk for a Cure at Penn Charter High School.
Julia has become one of our biggest advocates for raising awareness about Progeria as well as fundraising. Beyond fundraising she has become part of our family. She loves each of our kids and goes to crazy lengths to do things for them! Although we do pay her for some babysitting, there are many times she comes over just to play with the kids which is a huge help for us! She has so much energy and thankfully she has channeled that energy into helping children and families like ours. She is the shining example of how one person’s efforts can impact the lives of many people. Julia is a wonderful role model for our kids, especially our daughter and we are so happy to have her in our lives! We are so glad she was persistent in contacting us and even happier that her persistence is paying off in big ways for the Progeria Research Foundation!”
From everyone at PRF, THANK YOU Julia, for all you do to help kids with Progeria!
Julia helping set up
Julia and the boys- Nathan and Bennett
We would like to introduce you to Karen Gordon Betournay, our latest Spotlight Volunteer. Karen has been the volunteer website coordinator since PRF was founded in 1999. She is responsible for maintaining and updating the PRF website. She also has the honor of being Sam's Aunt, and sister to Executive Director Audrey Gordon and Medical Director Leslie Gordon.
Being part of this incredible organization is very important to Karen, "It feels like I am doing something truly worthwhile. As the website coordinator, I get to contribute to the cure of Progeria. When all of this started, back in 1998, I thought; how can I help? Progeria has so profoundly touched our family and I needed to find a way to help."
Karen found her way to help by taking on the vital role of maintaining PRF's website. "I have no formal website training. I had been trying to make a website for my business, Animal Manners, back in 1998 and asked a friend to teach me some basic html. I built it and updated it and learned as I went. Luckily I had people to answer questions along the way, and soon I was able to transfer my new-found skills to the PRF website. It is very challenging – a constant learning process that I enjoy tremendously. It's also a heartfelt way to show my family how much I love them. This was, is and will continue to be a priority for me. It is an honor and a privilege to contribute to this important cause."
We are grateful to Karen for all the time, effort and love she puts into volunteering for PRF.
Every few months, we highlight a person or group that exemplifies the true meaning of the word "volunteer". 2011. Meet Amanda Lynn Mayhew-Hare, model, motorcycle enthusiast, big game hunter, mother, editor, football junkie, fitness coach, gearhead, linedancer, philanthropist and PRF volunteer extraordinaire.
We are proud to acknowledge Amanda for all she has done to help children with Progeria. Her signature event, now in its 3rd year, is the very successful motorcycle Ride for Progeria with Amanda Lynn and Friends. The event, which is held in Elmira, Ontario, includes the ride itself, live entertainment, door prizes, refreshments and more.
Along with organizing the Ride for Progeria, Amanda has done an outstanding job at raising awareness for Progeria. "I love knowing I'm helping the kids," is her philosophy, and it is how she lives her life on a daily basis. She uses many of her public appearances (and she has a lot of them!) to educate people about Progeria. She always dedicates space on her website, www.fytnessfanatik.com, in her newsletter, and during her TV appearances to talk about these special children with Progeria. As Amanda says, "Everything I do is about bringing awareness to Progeria". We wish we had more of her!
We are so very grateful for her energy, creativity and enthusiasm. Thank you Amanda for being a tireless advocate for children with Progeria!
In June 2010, we are proud to acknowledge Sharon Wyner as a wonderful example of one of our amazing volunteers in the Peabody area, near PRF’s office. Sharon prefaces each conversation with “What can I do?” and this exemplifies the type of volunteer that she has been over the past 5 years.
Sharon has been a pre-school and religious school teacher for more than 15 years on the Boston’s NorthShore. She is an active member and participant in her religious community as well as the local school community and, with her husband Anthony, has brought up 2 daughters. Volunteering for PRF has been a total family experience as Anthony and her daughters have also worked at our local events – the girls even helped raise money selling their homemade jewelry!
Sharon first became aware of Progeria when she was a congregant at Rabbi Harold Kushner’s temple. She later met PRF Executive Director Audrey Gordon, and decided to volunteer. She felt so blessed that her children were healthy and wanted to help others not so fortunate. How lucky for us that Sharon lives so close to the PRF office!
Sharon has manned the registration desk at the International Race for Research in Peabody for the past 5 years. We don’t have to even ask her to volunteer anymore – she asks US! Most recently Sharon helped assemble 500 copies of our new Progeria Handbook . At time she has just shown up at the office and began working on the handbooks without even announcing she was there!
It’s volunteers like Sharon that allow us to help the families of children with Progeria. Over the years she has grown deeply passionate about our work, and it’s so nice to know that Sharon is always there to lend a hand. THANK YOU SHARON for being such a vital part of our Volunteer Team – we are very lucky to have you!
Brooksy Village: Featured Volunteer
We are proud to acknowledge the wonderful volunteers at Brooksby Village, a retirement community in Danvers, MA. They have been helping us prepare and mail our newsletters for over 5 years. We literally would NOT be able to do it without their help!
Our newsletters are mailed twice a year now and our mailing list has more than doubled in that time span from 4,000 to almost 9,000!! WOW!! These volunteers are so passionate about our Foundation, and no matter how many newsletters are mailed or how many steps there are to the mailing, they always show up in large numbers to help for a morning or afternoon, making sure that the mailing is completed efficiently and on time.
Tom Cook, the Volunteer Coordinator at Brooksby Village, always cheerfully accommodates the group with a spacious room. . We always begin each mailing by updating the group on what the Foundation is doing and sharing the latest research news since the last mailing, as the group is always eager to learn of our progress. Many of these people have become generous donors to the cause as well!
A special thank you to Quinn, who ALWAYS stays an extra hour or two to help us count and carry the enormous quantity of newsletters to our cars - This is no small task indeed!
We look forward to our mailings at Brooksby Village as it’s a rewarding experience to involve the community in one of our most important missions – public awareness! The continuity over the years has given us a chance to get to know these generous volunteers who have given so much of their time and energy. They really feel as though they are valuable members of our volunteer team, and they ARE!
Thank you Brooksby Village volunteers!!
We are lucky to have you on our team!
Several times a year, we highlight a person or group that exemplifies the true meaning of the word "volunteer". PRF is lucky to have hundreds of people from around the world who generously give their time, talents and energy to help raise awareness and funds for children with Progeria. We hope you enjoy reading about all our Miracle Makers, and that they inspire you to join our team because it is only Together that we WILL find the cure!
We are proud to acknowledge Ismael Negron, one of our wonderful, dedicated translators. Isma’s “day job” is a mechanical engineer and patent examiner in the US Patent and Trademark Office in Virginia. And when off the clock, he spends lots of time translating important information for our Spanish-speaking families of children with Progeria.
Isma first became familiar with Progeria after seeing the Primetime special about PRF in October 2003. He then wrote to us to offer his translation services, and has been a valuable member of our volunteer translator team ever since. Isma often translates “on the spot” – within an hour! - enabling us to communicate effectively with Spanish-speaking families of children with Progeria. He has even participated in a conference call between PRF and a Spanish-speaking family from another country.
Asked why his translation work for PRF is so important to him, Isma said, “I am not a doctor, so I do not have the knowledge to help with a cure. I know Spanish and English, so, I decided that the least that I could do was try to make it easier for those who do have the knowledge and strength to help, to communicate with the kids with Progeria and their families. Helping with translations is not something that I do for the Foundation, but rather something that they do for me.”
Isma has helped us open up the lines of communication with families of children with Progeria. Thank you, Isma -- we are lucky to have you on our team!
Read more about our team of translators.
In October 2006 Amanda from Switzerland, a 12-year old high school student, challenged herself by climbing 19,340 feet of Mount Kilimanjaro in Tanzania last October. She raised over $9,500 for PRF by soliciting sponsorships for her climb from friends, neighbors and schoolmates.
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We have some of the most caring, dedicated and passionate volunteers ever! They are really making a difference in the lives of children with Progeria!
Jessica: "He [a boy with Progeria that she saw on TV] touched my heart and made me feel as if it was my turn to volunteer and help find a cure for Progeria."
Susie (college student, USA): "I have been a volunteer at The Progeria Research Foundation since September, 2005. I became aware of Progeria after a school project, and ever since then I have been passionate about helping to find a cure."
|Susie and Megan draw together in Boston in November 2005|
Brett, age 12, USA: "I feel fortunate to have a great life and I want kids with Progeria to feel the same."
|Brett and Sam at PRF's 2005 International Race for Researc|
Kim, USA: "Volunteering my time for PRF has been a gratifying experience. It is such a great feeling to be part of an organization that you SEE the results of your efforts! In the time I have been involved with the Foundation, I have seen such incredible growth, medical breakthroughs and countless successes...all in a few years! When the gene was discovered with work that researchers did on a PRF grant, we could say, 'I helped make that happen! I was directly involved in helping to raise those funds!' Everyone likes to be part of a winning team and volunteering for PRF sure feels like I am part of that team. I always say I do it because I want to be in the room on the day the cure is announced. I know it will be soon."
|Kim, winner of our second "Amy Award"|
Helene (Germany): "Thank you for giving me the opportunity to help. Nothing is more rewarding than giving something to others."
Thais (USA): "You guys can indeed count one me for anything you might need!!!"
|Thais at the International Race for Resear|
Lucy (USA): "I can only hope that we are all doing our part to make Progeria a thing of the past, soon!"
Mike (from Canada): "I have to tell you that we are having a blast doing this [running a series of events that raised $7,000 in 2005]. We are all proud of what we and our friends have accomplished in "together we will find a cure". This is probably the nicest thing we have ever done as a group or individually.
|Mike of the "Bud Boys" - a true Miracle Maker|
DID YOU KNOW?
… Our dedicated Volunteers and Miracle Makers, together with our Chapters raised over $800,000 in 2014 to fund Progeria research and bring us closer to a cure – WOW - Let’s make 2015 even more successful!
… We have chapters in California, Michigan, New Jersey, Ohio, Pennsylvania, Southwest Michigan, Texas and Kentucky! These dedicated groups organize road races and other events, and are always looking for people to help or just come to support their efforts.
… You can be a Miracle Maker for PRF and help us reach our goals no matter where you live!
… YOU CAN MAKE A DIFFERENCE!
Decide today that you will impact the lives of these remarkable children by getting involved. Become part of our ever-growing, energized volunteer team - WE NEED YOU!