Collene Wright (AUS): firstname.lastname@example.org
Collene Wright is mother to MECP2-affected son, Van. Collene holds B.A. degrees in Psychology and Media Studies. Collene is the founder of the Van Wright Foundation, an Australian charity with the express purpose of raising funds for research into a cure for MECP2 duplication syndrome. In addition, Collene has developed a career in the media/advertising industry over the past 15 years and is currently Deputy State Sales Manager for Adshel. Previous roles include management positions at Publisher's Internationale and APN Outdoor.
Peter Anderson(US): email@example.com
Peter Anderson is father to MECP2-affected son, Adam, and daughter, Nora. Peter holds a B.F.A. in Illustration and is employed as a Senior Character Artist. Since it's inception, Peter has spearheaded the daily operations of the 401 Project and produces all design and media content. Peter and his wife, Elin, host the annual All 4 Adam fundraiser to raise critical funds to reverse MECP2 Duplication Syndrome. Peter, Elin, Adam, and Nora reside in North Andover, Massachusetts.
Jenny McMillan(UK): firstname.lastname@example.org
Jenny McMillan is mum to MECP2-affected son Blake, age three, and Faye, age five. Jenny holds a BSc in Nursing Studies. Through her research-focused nursing career, Jenny is aware of how long it takes to develop treatments, so she knows we need to act quickly. Blake is profoundly affected by MECP2 duplication syndrome. He is still unable to sit, roll, crawl, finger feed etc., and he began having seizures at just one year of age. Even while managing Blake's medical complexities, Jenny has committed herself to fundraising after learning of the promising research that was taking place. Jenny has raised several hundreds of thousands of dollars for MECP2 Duplication Syndrome research through her myriad grassroots campaigns. Jenny, Blake, and Faye live near Dundee, Scotland.
Kim Spangler (US): email@example.com
Dr. Kimberly Yearick Spangler is mother to MECP2-affected son, Bo, age three. Dr. Spangler holds a B.S. in Biochemistry from Virginia Tech and a Ph.D. in Organic Chemistry from Georgetown University. She is employed as a program manager for the U.S. Department of Defense overseeing energetic material synthesis and formulation. Combining her professional scientific background and unrelenting desire to cure her son of MECP2 Duplication syndrome, Dr. Spangler is facilitating information exchange from the scientific community to the public to effectively fundraise for promising cures. Kimberly and her husband Ryan are hosting the inaugural Reverse MECP2 NYC Gala in November 2015. Kimberly, Ryan, and Bo reside in Doylestown, Pennsylvania.
Taryn Taylor (US): firstname.lastname@example.org
Taryn Taylor is mother to MECP2-affected son, Brantley, age 10 months, and daughter, Gentry, age two. Taryn holds a B. A. degree in Business Administration from Southwestern College in Winfield, Kansas. She is employed as an Administrative Assistant to the Construction Division Engineer for the Oklahoma Department of Transportation. Taryn is quickly learning how life-changing and life-threatening MECP2 Duplication Syndrome truly is. She is up for the challenge to help fundraise to find a cure for our children. Taryn, her husband Bryan, Gentry and Brantley reside in Perry, Oklahoma.
Sean Kim (US) email@example.com
Sean is the father of MECP2 Duplication effected daughter, Elliana (Elli). Sean and his wife, Angela, have two younger children, Madelyn and William. Angela is an infusion pharmacist and Sean is a controller is the controller of a private construction company, managing all aspects of finance and accounting. Sean is a lifelong Texas Longhorn who received both Bachelors in Accounting and Masters in Accounting and Business Administration at University of Texas. Sean and Angela have recently started fundraising efforts through #For1Day campaign so that Elli can one day join her siblings in everything they do.
Dyna Mendoza (US): firstname.lastname@example.org
Dyna Mendoza is the mother of 6 year old fraternal twins. One of the twins, is affected by MECP2 Duplication Syndrome and his name is Levon. Levon's twin brother, Maceo is not affected. Dyna has a B.F.A. in Graphic Design and is the Art Director of the San Francisco based sports media company Bleacher Report. Dyna and her husband, Joseph, (who works in the film industry) are doing a full length documentary on their son Levon and their family's journey with MECP2 Duplication called, "Levon's Light" that they started in 2013. They debuted the 5 minute trailer for "Levon's Light" in Sept of 2013. Since then, they have worked on and completed five video shorts for the MECP2 and Rett community to help raise awareness, show the importance of fundraising and research and to spread hope. Dyna's contribution is bringing community outreach and family support to the MECP2 Community. Dyna, Joseph, Maceo and Levon reside in Daly City, California.
Ryan Spangler (US): email@example.com
Ryan Spangler is father to MECP2-affected son, Bo, age three. Ryan holds a B.A. in International Politics from Pennsylvania State University. Ryan spent the last 10 years in Washington, DC working in the public and private sector. Most recently he was a federal lobbyist representing a variety of clients and interests throughout the federal government. Ryan is transitioning his experience with lobbying, grassroots, and strategic communication to advocate on behalf of Bo and the broader MECP2 community. Ryan and his wife Kimberly are hosting the inaugural Reverse MECP2 NYC Gala in November 2015. Kimberly, Ryan, and Bo reside in Doylestown, Pennsylvania.
Pam Albert (US): firstname.lastname@example.org
Pam Albert is mother to MECP2-affected son, Braden, and daughter, Amber. She lost her firstborn son, Noah, to complications of this disease one month shy of his 6th birthday. Pam holds an Associate in Science Degree in Paralegal and is employed as an Executive Assistant to the Majority Leader with the Pennsylvania House of Representatives. Pam and her husband, Scot, started the first MECP2 Duplication website, www.mecp2duplication.com, and host a yearly fundraiser with proceeds going to research. Pam has tried hard to raise awareness about this disease by writing articles for newspapers, t-shirt and bracelet sales, and having a resolution introduced yearly in the Pennsylvania House of Representatives declaring July as MECP2 Duplication Syndrome Awareness Month. Pam also worked with Monica Coenraads to create the MECP2 Duplication Syndrome Fund at the Rett Syndrome Research Trust (RSRT) in 2010. The Albert family resides in Middletown, Pennsylvania.
Beatrice Palma (Italy): email@example.com
Beatrice Palma, is the sister of Giacomo, 47 years old, the oldest known person affected by MECP2 Duplication in the world, and also the aunt of Leonardo, 3, also affected. Giacomo received his diagnosis in 2016, following Leonardo's diagnosis.
Beatrice has a degree in foreign languages and literatures at the Catholic University of Milan and has been working in the foreign sales department for several firms in the metal mechanics field in the past 10 years. She loves foreign languages, and especially loves seeing how although there are many cultural differences, globally, human beings are all the same, everywhere. Beatrice is working to connect people across the world to reach the goal of finding, all together, a cure for MECP2 Duplication Syndrome and has recently translated the English version of The 401 Project Website into other languages. Beatrice, her family, Giacomo, and Leonardo live in Pesaro, Italy.