Teresa Partington
14 CAPTURE. COSTTREE 2016 Q1 ISSUE
INTERVIEW:
FOUNDATION
OF
CT: What is your mission?
TP: Our mission is to find a cure for the genetic disease Cystinosis
CT: What is your role?
TP: I am the President of the Jenna and Patrick Foundation Board of Directors, well we are a Mom and pop kind of organization. So I kind of do everything.
CT: What are some of the challenges you’ve faced along the way?
TP: Finding an audience for what we’re trying to do, extending beyond this local community that we are in. Because we are so small we don’t have a staff to reach out so I would say that’s the biggest thing. We keep asking the same people over and over again for funding.
CT: How does your organization make a difference?
TP: Over the last eight years we have contributed over two million dollars to the Cystinosis research foundation based in Orange County. 100% of the dollars passed on to them are used to fund research into the disease.
CT: What are some of your struggles you’ve faced financially?
TP: We don’t have the man power to do grants, or apply for grants because it’s very, very, time consuming. Our audience is pretty narrow...it’s our business and school community mainly. We aren’t able to operate at zero costs. So we do have the overhead of putting on an event we don’t pay a staff but we do have to pay for the space, rental and things like that. So we do have a challenge to keep our costs down. We don’t want to waste any dollar that’s been donated.
CT: What goals have you met?
TP: My kids are benefiting from the use of a drug that we helped fund the research for, so they used to take a medicine every 6 hours and starting three years ago they only have to take a medication every twelve hours in addition to other medications. They’re enjoying the use of an eye drop therapy that is supposed to keep their disease at bay as far as their cornea is concerned. We helped fund the research into that as well.
CT: What’s next?
TP: A Doctor in San Diego who created a colony of mice with this disease Cystinosis, has cured mice!
She has an IND (Investigational New Drug Approval) submitted to the FDA and she expects to have approval within the next year and her first stem cell transplant patient at UCLA in the next two years.
CT: How will you get there?
TP: Continue to fund raise and pass funds along wherever we can. We will encourage Jenna and Patrick to be a part of trials if they want. But mainly fund raising to continue to support stem cell research. Because when the stem cell trials start they expect it to cost about $600,000 per patient.
CT: Throughout this whole journey what do you think your best moment was?
TP: When my kids starting taking the twelve hour medication three years ago…and we slept!! But that’s more from a parent end, the best moment was after our first fundraiser when the kids were newly diagnosed and we had friends that created our 501C3. We had the Walk of Hope Every time we have a fundraiser and people show up and the support we get and the amount of money we raise is always the best part.
CT: Why do you do what you do?
TP: Because my children are faced with something I would like to see remedied.