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What I hate about what we do…

There are aspects to working or running a charity that people do not realize. I would like to explain some of the things that we deal with that I don’t think outsiders can appreciate as they are simply are not aware.

1. Do you know what it’s like to know that everyday the success of your business is reliant on criteria that donors have created. Big time funders, the ones every charity dreams about having, want impact. So basically, in order to show that we have “assisted” people this month, we have to hope that more people get diagnosed with a rare condition! What is that?

2. The Facebook groups that provide much needed support, the ability to connect with another mom in similar shoes on a day when you have no more energy to face the world, that support isn’t important to finders. That’s intangible. They want to know how many people started getting treatment this month? How many laws where changed? I often wonder if they even realize that if a patient starts treatment they stay on it forever (in most rare Conditions as treatments aren’t curative). So therefore we continuously having to hope for new patients to come through the door to try get them on treatment – what happens with the thousands that have been helped thus far? We can’t count them as it wasn’t a ”new” win. But yet we have worked so hard to help them too, buy loving them. And remembering them.

3. How do you continue to show growth when you have already accessed the critical mass of your market. Sure. We haven’t touched everyone in our country. But most doctors are aware of us and refer patients to us. So it goes without saying that our “growth in numbers” is going to level out… and then we won’t be showing growth. We almost have to hope we never reach our dream of reaching every affected patient as when we do, we will have maxed out our potential.

4. Some patients will never even know the work that was done to help them before they were diagnosed. Years ago, we started working on getting treatments into the country, making sure they got registered, ensuring funders reimbursed for them, making sure guidelines were in place. So today, if you get this diagnosis, your doctor calls your medical aid and booom. Treatment is approved. Years of hard work went into that!

5. I don’t think people understand the weight I carry on my shoulders day in and day out. When dealing with the likes of the Presidency, the United Nations, the African Union… I continually feel the pressure of needing to remember the needs of every single patient in this community. I wake up in the middle of the night stressing that I may forget a rare need in a rare condition that isn’t top of mind! What happens if I do forget and it gets left of some policy somewhere and then those patients can’t get what they need?

6. Do you know what’s it like to have hard working, dedicated staff members who deal with compassion fatigue day in and day out, and then not know if you can pay them a well deserved bonus at the end of the year, because that decision is ultimately made by a CEO in an ivory tower who has never actually spoken so a patient who had benefited from our work, but instead focused on our “slow growth”.

7. Have you ever worked so hard for a goal, and just as you about to achieve it, a politician comes along and changes the law? Well that’s us most days! We work so hard, to have to start all over again,

Lastly, I think people often forget that I’m also a mom with a child who has a rare condition. When you call me to talk about how tough it is, I really do know! I get it! I’m in it too. Some days it’s so hard to leave my son at home and go to work to fight for yours.

My wish is that the heads of CSI would spend time in the charities that they support. Take a week and be on site with us. Then you will truly understand the value of hugging a mom who lost her child, the joy of letting a family know treatment has been approved, and the heartbreak that is the change in landscape which we have no control over.

Having said all this, I have no desire to leave this space. Yes, I get terrified going up and giving talks to world class doctors. Yes, I feel completely overwhelmed dealing with policy makers, and honestly sometimes I ask myself why they asking my opinion. Who am I anyway?

But, knowing that we have made even the smallest change for even one patient – is enough for my heart. My bank balance may disagree. My head may get anxiety.

But my Heart, oh my heart, it is full…

The words that I live by…

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