Kevin has been busy at PKU events, and was recently interviewed by Patient Power. To hear all about it and other important information, click below to view our blog.
Also, don't forget to visit our partner, Patient Power by clicking the logo link below!
"Thank you for this amazing venture and your interest in this disorder - it gives one so much hope for the future and for the wonder that is our human race. I have always had a mission to source reasonable formula for my daughter and have explored all avenues open to me including lobbying pharmaceutical companies to sponsor or at leastassist in bringing it into my country...
Thank you once again."
- Janet*, South Africa
The Bare Facts...
Inherited metabolic diseases are a clinically diverse group of medical conditions which require specialist diagnosis and care. Although individually they are rare, they have a collective incidence estimated to be 1 in 1500 persons.
Source: Journal of the New Zealand Medical Association, 21-September-2007, Vol 120 No 1262
Board Of Directors
Adam Johnson (CPKU adult), USA
Kevin Alexander (CPKU Adult), USA
Chairman of the Board
Kate Buckland (CPKU Adult), UK
Director of Marketing and Public Relations
Elizabeth Vlock (CPKU Adult), USA
Adam Johnson - President
Adam Johnson has Classical PKU. He is the only child between his own parents, though he has several step/half siblings. Adam was born in Houston, Texas, USA and still lives there with his wife, Shelby. Adam was diagnosed at 2 weeks old following a second heel prick because they almost didnt detect it the first time. As with any PKUer, Adam is familiar with the struggles of temptation of food and the side effects that giving into that temptation causes. He is a patient of Texas Children's Hospital in Houston, TX. Adam Graduated from Splendora High School in 2003 with Honours, and is a graduate of Andersonville Theological Seminary. He also holds business certifications from many reputable institutions.
Kevin Alexander - Chair of the Board
Kevin Alexander was diagnosed with Classical PKU at birth. Growing up in the 1980s Kevin was told that he could relax his diet as he grew older. As a teenager, he didnt keep a very strict diet and stopped drinking formula. As a result, he was a C average student in high-school and college. In his early twenties he started drinking formula again, and his overall health improved. Subsequently he was able to pursue a graduate degree, which he completed in 2011 with a 3.75 GPA.
He has never allowed PKU to prevent him from accomplishing his goals. He has a Bachelors Degree in Mass Communication, a Master of Arts in Theological Studies, and has over 10 years of experience in professional video production. He spent 7 years working in local TV news as a news videographer and satellite truck operator. He covered many national stories for local news including the 2003 Columbia Shuttle Disaster, numerous hurricanes, the 2007 BCS Championship Game (Geaux Tigers!), and even witnessed the catastrophic damage in New Orleans less than one week after Hurricane Katrina. He left the TV news business 4 years ago and now works as a corporate videographer, and also produces various short documentaries related to his personal passions. He has traveled the world, shooting videos all across the US, Mexico, the Cayman Islands, Russia, and Ireland. Later this year he plans to travel to Uganda and as well.
Until 2011 Kevin did not have much contact with other PKU patients. Since the release of his short documentary My PKU Life on YouTube, Kevin has now connected with hundreds of PKU patients and family members around the globe. He has since begun work on a feature length documentary on PKU with a currently unscheduled release date. He has traveled the world using his gift of filmmaking to promote various causes, but has found the most satisfaction in building a community where PKU patients around the globe can receive the support they desperately need.
Kate Buckland - Director of Marketing and Public Relations
Kate Buckland is an adult with Classical PKU. She was diagnosed at 7 days old and maintained her low phe diet strictly until the age of 18, when she began to struggle. Kate grew up in an isolated part of Queensland in Australia and believes that her struggles with the diet during early adulthood were In part due to the lack of support available. it is this experience that drives her passion to help others with PKU. She now lives in England with her husband and her daughter, who does not have PKU. She is passionate about enriching the lives of those living with PKU and other metabolic conditions, and has been heavily involved in fundraising, raising awareness and advocacy work for PKU. In 2005 Kate raised over $5000 for an Australian metabolic disorders charity and was consequently raised Miss Fundraiser in a local fundraising pageant. She studied journalism at Central Queensland University and started her career on a regional newspaper in Queensland as a cadet photojournalist before becoming a newspaper editor, online editor and travel writer and then broadcast news journalist and presenter. She then worked through the ranks in professional communication and public relations, working in government, social housing and public awareness, and has headed up successful PR campaigns across multiple countries simultaneously. Kate was also the founding Managing Director of Big Sky Creative, in Melbourne, Australia - a PR and professional communications company she started but later closed in order to become a mother. She has travelled through much of Europe, Asia and part of North Africa and firmly believes that PKU will never stop you doing anything in life.
Elizabeth Vlock - Registered Dietician
Elizabeth Vlock has Classical PKU. She was diagnosed at birth and has an older non-PKU sister and a younger brother with PKU. She was born and raised in Nebraska and went to University of Nebraska Medical Center for treatment. In the near future, she will live in Connecticut with her husband. She went to the University of Nebraska for her Bachelors in Nutrition and Dietetic Sciences before her acceptance into a dietetic internship at University of Iowa. In August 2010 she received her license to become a registered dietitian. She chose to continue her education and went back to University of Nebraska for her Masters degree in Nutrition and Health Sciences. Her thesis revolved around adult PKU management. She has also done multiple seminars on PKU which include use of the glycomacropeptide protein (GMP) as formula and risk of osteoporosis in PKU patients. Elizabeth has the knowledge, desire, and experience to work in the metabolic area. She has spent time with metabolic dietitians and has the understanding of what patients are going through. The nutrition knowledge she has accumulated through her studies enables her to help make the best of the low protein diet and teach others to do the same. Having PKU and having a grandmother who was a dietitian sparked a desire to become a dietitian so she could work with PKU patients and make a difference.
Malany Turner - Creative Editor
Malany Turner is an adult with Classical PKU. Diagnosed at birth, she and has been on diet for her whole life and intends to remain so. She grew up with an older brother who also has PKU and two very supportive parents who encouraged both Malany and her brother to follow their dreams and not ever let PKU hinder them. Malany lives with her partner and 3 other friends in New Zealand. She is in the process of completing a Diploma in Photographic Imaging while following her dream of becoming a professional photographer, and prior to this completed several qualifications in art including a Certificate in Glass Design and Production, and completed the first year of a Bachelor of Applied Visual Imaging. All three courses have strong connections to other forms of Art such as Design, Digital Media and Illustration, and as a result Malany has a well rounded knowledge of many artistic applications. Her plans for the future include starting her own photography business, which she will run alongside her work with MDF. Malany has found great support through the international PKU community on Facebook and PKU.com and through her communications with others has realised that she has been very lucky with her struggles with the diet. She discovered that a common theme within the community is that those with PKU often feel alone and parents of PKU children may feel daunted by the responsibility a condition such as PKU can bring. Through her role with MDF she hopes to reach out and let others with PKU and their families know that they are not alone, whether they are on or off diet.
Disclaimer: The content of this website is provided for general informational purposes only and is not intended as, nor should it be considered a substitute for, professional medical advice. Do not use the information on this website for diagnosing or treating any medical or health condition. No information on this website is intended to diagnose or treat a disease. If you have or suspect you have a medical problem, promptly contact your professional healthcare provider.By using this site you agree that MDF , its sponsors, partners , members, assigns and other interested parties shall be held harmless from your use or misuse of the material contained herein.
Becoming a member of the Metabolic Disease Foundation is simple and brings with it a range of benefits that are exclusive to our members. Please browse our membership options below.
How to Join
Joining the Metabolic Disease Foundation is easy! To join us and start benefiting from our range of services and events simply browse the options below then click on the Join button on the relevant page. No PayPal account is necessary.
Please contact us if you wish to pay by check or money order.
Where does the money go?
Money raised through our membership program helps to keep MDF running so we can be there for you. It supports MDF programs such as the International Low Protein Food Bank*, helps to fund events across the world that have you in mind, and also benefits metabolic research programs**.
** Metabolic research programs that receive funding from the Metabolic Disease Foundation are selected at the discretion of the Foundation.
Our annual corporate membership is available to companies and corporations in any country. While it is designed with companies with an interest in the metabolic community in mind, there is no requirement for this and any company wanting to support the Metabolic Disease Foundation is welcome and encouraged to join.
By joining MDF on a Corporate Membership, your company or organization will gain the following benefits:
Join MDF as a Corporate Member for $200 USD per year
Metabolic Disease Foundation's individual membership is suitable for metabolic patients and families and is an annual, 12 month membership. The Individual Membership costs $25 USD per year and Individual Members gain from the following benefits:
Click here to join MDF on an Individual Membership for $25 USD per year
Disclaimer: The content of this website is provided for general informational purposes only and is not intended as, nor should it be considered a substitute for, professional medical advice. Do not use the information on this website for diagnosing or treating any medical or health condition. No information on this website is intended to diagnose or treat a disease. If you have or suspect you have a medical problem, promptly contact your professional healthcare provider.By using this site you agree that MDF, its sponsors, partners, members, assigns and other interested parties shall be held harmless from your use or misuse of the material contained herein.
The Metabolic Disease Foundation cannot exist without your support. All donations no matter how big or small are very deeply appreciated and go towards helping people living with metabolic diseases all over the world, research into finding cures for these conditions, establishing the International Low Protein Food Bank and keeping MDF running. Please support us so we can help as many people as possible and work towards our dream of fair and equal access to quality care and access to low protein foods and formula for all metabolic patients.
Making a donation is easy! We accept donations by PayPal, check or money order. To donate now via PayPal simply click on the button below and follow the prompts.
If you would prefer to donate by check, please send via post to:
Metabolic Disease Foundation
260 Cooper Rd.
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To make a donation to Metabolic Disease Foundation, please click the button below.
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Please Donate! Your generosity WILL make a difference!
- Janet*, South Africa
Has the Metabolic Disease Foundation helped you?
If so, we would love to share your story. Simply let your contact personknow you are happy for us to share your story. Alternatively, you can submit a testimonial by using the form below. Please include some information about your situation. Don't worry, we take personal privacy very seriously and we will not publish your name or any contact details.
We are now accepting applications for assistance from individuals, families and medical professionals.
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Metabolic Disease Foundation
260 Cooper Rd
Here at the Metabolic Disease Foundation we are constantly seeking meaningful relationships with other companies that share our vision of bringing reputable and reliable care to those with PKU and other rare metabolic disorders. We welcme and appreciate the hard work and dedication of all our sponsors and partners which are listed below. Would you like to become a sponsor or partner? If so, feel free to email us at:
Please check back often to see an updated list of all our sponsors. Want more information about them? - then click on their logos below to be directed to thier website.
Don't Forget To Visit Our Blog!
Each week our Chairman of the Board, Kevin Alexander, shares his special insight into the struggles (and triumphs) of life with a metabolic disease. Don't forget each week to check in and comment! Click the blog button below to go there now!
Please take tthe tme to view our many informative videos featuring members of the Metabolic Disease Foundation Team. Your inpu is appreciated.