Peroxisomal biogenesis disorders (PBDs)—also referred to as Zellweger spectrum disorder—is a genetic metabolic disorder affecting children. Those with the disease have upwards of 50 biochemical abnormalities. While the spectrum ranges, the prognosis is grim: anywhere from death within the first year to survival into early adulthood with severe special needs.
Children living with the disease suffer from profound vision and hearing loss, seizures and significantly impaired cognition.
Estimates vary, but the incidence of PBD is believed to be between 1 in 25,000 and 1 in 50,000.
The Mateffy family established the Wynne Mateffy Research Foundation (WMRF) to create a legacy of helping others for their daughter, Wynne, who was diagnosed with PBD in March 2015. The disease will cut her life painfully short; but with your help, she will have a postive impact on generations to come.
Real cures have been discovered for other metabolic disorders. You can be a part of it!
The WMRF’s goal is to raise $1,000,000 for PBD research. This will be the largest influx of private capital to ever reach this research community!
This will be our only large scale fundraising effort. We would like to make a large one-time impact. The fundraising in future years will be minimal. Please consider making the WMRF a significant portion of your 2015 charitable giving.
The WMRF is a 501(c)3 tax-exempt organization.
The Mateffy family is covering administrative costs so 100% of donations can go to programs.
Newborn Screening for Peroxisomal Disorders in Wisconsin. This critical project will ensure that infants born with PBDs will be identified on day one. While there is currently no treatment for PBD, there is a closely-related disorder that is extremely treatable (X-linked ALD). If these babies are identified before they are symptomatic, their lives will be saved! You can make that happen!
These screenings will also spare babies and their families a heart wrenching diagnostic odyssey of tests and unknowns.
A study of a promising drug (Diosmetin) in genetically engineered rats - These rats have been engineered to have a common PBD causing mutation. Money is needed to fund the study of a promising drug.
High throughput drug screening - A very exciting new way to try many different drugs on effected cells quickly.
Sponsorship of the 2017 International Peroxisome Meeting - A crucial conference that enables the leaders in the field to convene and discuss the latest ideas for treatments and potential cures.
A permanent legacy for a life cut painfully short.
The first $250,000 donated to the WMRF will be leveraged 4 times!
1. The Mateffy family will match the first $250,000 raised, bringing those funds to $500,000.
2. That $500,000 will then be donated to the University of Wisconsin, where it will be matched by philanthropists John and Tashia Morgridge.
3. That final match will bring funds to $1,000,000! This $1,000,000 will endow the Wynne Mateffy Professorship of Peroxisomal Disorders, which will be a permanently endowed position at the University of Wisconsin - Madison. This endowment will generate $40,000 to $70,000 every year and fund research into peroxisomal disorders!
The professorship will launch with a critical project: to establish life-saving newborn screening in Wisconsin.
This is just the first task of the professorship. Thereafter, the University of Wisconsin, in conjunction with the board of the WMRF, will seek out the most important projects for this forgotten class of disease.
The goal is for the professorship to impact the future—25, 50 and 100 years down the line! Hopefully a cure will be found by then, and the focus can turn toward other disorders.
Dr. Mei Baker will be the first holder of the Wynne Mateffy Professorship of Peroxisomal Disorders! Dr. Baker is an award winning geneticist and newborn screening professional. She is currently co-director of the Wisconsin Newborn Screening Lab. Dr. Baker accompanied the Mateffy family to Omaha in July to attend the International Peroxisome Meeting. While there she met with the leading researchers and practitioners in PBD. Together they have identified newborn screening for PBD and X-linked ALD as her first project. This will be truly life saving work and we couldn't be more excited!
Beyond the Professorship
The second $250,000 donated will be leveraged 2 times via a matching donation from the Mateffy family!
This will fund research studies directly impacting PBDs. The Wynne Mateffy Research Foundation has partnered with the Global Foundation for Peroxisomal Disorders. Together we have identified several high-impact projects in need of immediate funding. We can't wait to get started!
It all starts with your donation!!!
What % of donations go to programs?
100%! The Mateffy Family will be covering all administrative and overhead expenses of the WMRF.
Can I control how my donation is used?
General donations are preferred but if you have a specific requirement, we are happy to try to accomodate.
Will I receive updates on the professorship and directly funded research?
Yes, the WMRF will send an annual letter to supporters.
I'm confused about where the money is going and all the matches/leverage.
Totally understandable! The first $250,000 in outside donations will result in $1,000,000 after the Mateffy family and Morgridge match. That will fund the professorship. The first activity of the professorship is to establish newborn screening for PBD in Wisconsin.
The next $250,000 donated will still be matched by the Mateffy family for 2x leverage! The exact research proposals to be funded are TBD. The WMRF will work with the Global Foundation for Peroxisomal Disorders to identify the most impactful proposals.
Is my donation tax deductible?
Yes! The Wynne Mateffy Research Foundation is a tax-exempt 501(c)3 organization. All donations are tax deductible.
So many thanks from Josh, Caiti, Wynne and Piper!