Lex believes that volunteering plays a crucial role in our global society. Without volunteering the world would look very different!
He is the founder and president of a worldwide organization for people with a special rare disease called CMTC. Lex is the father of a daughter with this disease and decided shortly after birth not to sit but to take action! For more information see the website.
CMTC is a rare bloodvessel disease in which the complications range from cosmetic to death. At present, it is known of at least six children who have died from complications.
The main duties as president of the global CMTC-OVM organization are:
- Producing policyplan.
- Producing annual budget.
- Producing annual report.
- Representing the organization at worldwide conferences etc.
- Chairing international membership meetings.
- Preparing grant applications / sponsor.
- Stimulating (international) cooperation with other organizations.
- Maintaining contacts with professors and doctors (worldwide).
- Arranging (free) medical diagnosis.
- Guiding patients and families.
- Organising and managing international conferences and family days.
- Recruiting and managing volunteers.
- Performing financial management.
- Accountability Health Ministry to grant use.
- Defining and (partly) executing marketing policy.
- Defining and executing social media strategy.
- Expanding and maintaining public relations.
- Speaking during (international) conferences.
- Raising funds.
- Creating project plans and executing projects.
- Preparation and maintenance manuals (eg. annual global meeting, family day and volunteer handbook).
- Maintaining websites.