As the first executive director of the ML4 Foundation, I am honored to work with and serve this community of patients, researchers, supporters, and partners. I have had the great fortune to speak to and meet many of you, on the phone, through email, or at our 2014 Patient and Researcher Conference in Atlanta. It is an incredible honor for me to represent the Mucolipidosis Type IV community and I want to give you an idea of some of the roles I play in this job and how I work as your patient advocate.

As executive director my work falls into many categories, some of which are: patient advocacy, research advancement, fundraising, and communication.

As your Patient Advocate, I:

  • Seek new ways to promote information about ML4;
  • Speak to the families to learn about specific needs that require attention;
  • Connect families with medical practitioners;
  • Manage patient registry with Sanford CoRDS to increase participation;
  • Advocate for Mucolipidosis Type IV at the NIH, FDA and other agencies.

As your Research Advocate, I:

  • Communicate with researchers about ongoing and potential ML4 research;
  • Faciliate grant requests from researchers with our Scientific Advisory Board;
  • Seek new investigators interested in ML4 research;
  • Share new ML4 research with patient and supporter communities;
  • Communicate needs and work of researchers to partners at NIH and FDA;
  • Help enrollment of natural history;
  • Plan, host, and run the annual ML4 Patient and Researcher Conference.

As your Fundraiser, I:

  • Work closely with ML4 Board of Directors to plan and execute fundraising strategies;
  • Maintain donor database to ensure efficient donor data and communication.

As your Communications Director, I:

  • Compose regular e-newsletters to share news with our ML4 community;
  • Maintain Facebook and YouTube channels to share information relevant to patients and supporters.

I am always eager to hear from families and supporters with questions about our organization, about Mucolipidosis Type IV, or the work that I do.

Yours toward a cure,

Rebecca Oberman