News & Events
Latest Events
Keeping Up the Fight - Round 3!
The third "Erik's Chance" reception for the MPS1 Research Foundation was held on Friday, February 10th, 2012 at the beautiful Bahia Corinthian Yacht Club in Corona del Mar, CA. This year's event was a big success as the largest number of guests we have ever had learned in a special presentation by Dr. Aminian that the first phase of the research study we funded showed incredibly positive results!
Over 100 guests enjoyed a special evening that included a wine tasting from HammerSky Vineyards, a buffet dinner, dessert, live acoustic music, a silent auction and an opportunity drawing. Please see our Facebook page for photos of this event! With additional donations still arriving from people who could not attend, this year's event so far has raised over $35,000.
We look forward to donating the money raised to support the second phase of the research study led by Dr. Raymond Wang and Dr. Afshin Aminian of CHOC Children’s. For additional information on this research study please see Dr. Wang’s Page on our Website.
Latest News
Foundation Supported Study Clinical Results Analysis Now Underway
The 6th, and final, injections were completed this past August! The dogs continued to have no adverse reactions to the enzyme or anesthesia. Now that the intervention phase of the study has been completed, Dr. Wang and Dr. Aminian have moved on to the data analysis phase.
Analyzing the data will include measuring enzyme levels in the joint fluid and tissues, and microscopic analysis, to determine if there has been any visible reduction in GAG levels in the joint spaces (right elbows and knees) which they have been injecting enzyme into once a month for the past 6 months. If there is high levels of GAG (stored cellular material) it indicates the function of the cells has degraded, and this is the process that the enzyme replacement therapy has been designed to prevent for individuals with MPS1. This analysis phase is going to be time consuming, but the research team hopes to have results ready to announce at our next event in early 2012.
This study will hopefully serve as a first step toward a better understanding, and a potential new treatment, for joint pain and stiffness that people with MPS1 suffer with every day.
Prior News
Foundation Supported Study Now Underway!
The Intra-articular Enzyme Replacement Therapy on a Canine Model for MPS1 Study, led by Dr. Raymond Wang and Dr. Afshin Aminian of CHOC Children’s Hospital in Orange, CA, is now underway! This study will hopefully serve as a first step toward a better understanding, and a potential new treatment, for joint pain and stiffness that people with MPS1 suffer with every day.
Four dogs, naturally born with MPS1, arrived in LA from Iowa at the end of January. After the dogs cleared quarantine, Dr. Aminian and Dr. Patricia Dickson from Harbor UCLA Medical Center performed MRI scans of the dogs' joints. Dr. Aminian and Dr. Wang also performed joint biopsies on each dog to measure pre-treatment levels of storage in the knees and elbows.
After the dogs were given time to heal, each dog had their first intra-articular injections performed on March 21, 2011. Each dog received the same dose of iduronidase, the manufactured enzyme replacement for MPS1, in their right elbow / knee joints. The left elbow / knee joints will not receive the enzyme and will be designated as the control for the study. The injections went smoothly and the dogs quickly resumed their normal level of activity. As long as the dogs continue to be well, the next set of injections will be every month for a total of six months.
Our First Funded Research Study to Begin in December, 2010
The first research project funded by the MPS1 Research Foundation is scheduled to begin within the next few weeks at Harbor UCLA. The Intra-articular Enzyme Replacement Therapy on a Canine Model for MPS1 Study, led by Dr. Raymond Wang and Dr. Afshin Aminian of CHOC Children’s Hospital in Orange, CA, has passed all preliminary requirements. This study will hopefully serve as a first step toward a better understanding, and a potential new treatment, for joint pain and stiffness that people with MPS1 suffer with every day.
Contract negotiations between CHOC and Harbor UCLA were finalized in early November. Following that, the Harbor UCLA animal safety review board completed their final review. During this time, Drs. Wang and Aminian attended an animal safety course and met with a veterinarian to learn about canine anatomy. The MPS1 dogs should be arriving from Iowa soon, and following a brief quarantine the study can begin.
MPS1 Research Foundation Donates $32,500 to CHOC Children's
On Friday, August 27th 2010, The MPS1 Research Foundation presented a check in the amount of $32,500 to CHOC Children’s Hospital. Proudly representing our foundation, Erik Fletcher (9 years old), gave the check to Dr. Raymond Wang in support of his important new research project. This will be the first step in studying the potential of using direct injections of enzyme replacement therapy (ERT) into the joints to treat the severe pain and inflammation caused by MPS1.
Led by Dr. Wang, the study will be conducted in Southern California by physicians and researchers from CHOC Children’s and Harbor-UCLA Medical Center. The donation from our foundation was critical in securing the final funds necessary to launch this project. For additional details on this research please see his page on this Website.
Because of the generosity of individuals and families touched by the challenges faced daily by Erik and others with MPS1, we were able to raise this significant amount of money within five months of the formation of our foundation. We believe that, now with more MPS1 children living longer, it is imperative to identify and fund research such as this that can help provide them with a chance for a more comfortable future.
We are also pleased to announce that during a recent conversation with a leading medical expert, we learned that bone and joint complications are now emerging as an important new area of focus for the MPS research community. Thanks again to all of you who have contributed to our foundation. We will work diligently to connect your continued support to promising research to fight this tragic disease.
Prior Events
Keeping Up the Fight!
The second annual "Erik's Chance" reception for the MPS1 Research Foundation held on March 4th, 2011 was a great success! Just over 100 guests attended and we have raised almost $35,000! The weather allowed for a beautiful evening and sunset at the Thabit's lovely home. Guests were able to meet both Dr. Wang and Dr. Aminian who are working on the current study jointly funded by our Foundation and CHOC Children's.
Sweet Success!
The first bake sale in support of the MPS1 Research Foundation raised over $1,600! The bake sale was organized by Allie Bassman and her parents for her Bat Mitzvah service project to support MPS1 research. The sale was held on Saturday, December 4th 2010 prior to the USC/UCLA football game.
Allie has known Erik and the Fletcher family, founders of the MPS1 Research Foundation, for the past nine years. She has seen all of the hardships Erik has bravely endured throughout his young life as a result of MPS1. This enterprising young lady decided she wanted to make a difference in the life of someone she knows well and cares about. By raising money for the foundation she is also helping thousands of other children who have MPS.
The bake sale was a huge success in part due to the support of many families who provided delicious home-baked goods. Allie recruited her relatives, family friends and neighbors to bake the treats. She advertised both with a neighborhood-wide email and put up handmade signs throughout the One Ford Road neighborhood in Newport Beach where the Bassmans and the Fletchers live.
On the day of the bake sale, Allie and her family had all of the beautifully wrapped baked goods “professionally” presented on the table. Residents and visitors to the neighborhood turned out in droves to support the effort.
Several of Allie’s family’s friends also made donations to the foundation prior to and following the day of the bake sale. Because many of the people know either Allie or Erik, they were very generous with their support, either by baking the treats or by buying the baked goods and making donations. The success of this event demonstrates that with effort, creativity and a lot of heart, a young lady can be very successful with raising awareness and money for important research to help others.
First Annual Erik’s Chance Fundraiser Dinner raises over $25,000!
Over 90 people took time out of their busy schedule to come to the Costa Mesa Country Club on June 8th, 2010 and support our first fundraising event. The event was a big success with the MPS1 Research Foundation raising $25,640 to be directed toward important new research to help those suffering with this terrible disease.
At the dinner MPS1 families shared their experiences and Dr. Wang from Children’s Hospital Orange County (CHOC) explained how MPS1 progressively damages cells in the body. He also outlined his research project which will be an important first step toward developing a treatment for the pain and stiffness in the joints of children like Erik with MPS1. Dr. Wang’ also announced that CHOC has provided an initial grant of $21,000 for his research.
At the event we were pleased to announce a summer fundraising activity called “Pennies a Page” for Erik’s Chance - created so children can raise money for the foundation by signing up donors to support their summer reading. This activity is being led by Jenny Nicholas, a Lincoln parent who is a foundation volunteer. As a small, non-profit organization we rely on public donations and volunteer assistance. We hope you will encourage children you know to participate. Click on “Pennies a Page” right here on our website for details and to sign up!
