Thursday, 28 August 2014

Fundraising and the ALS Bucket Challenge

Several months ago I contacted a local Menchie's to see if they would be interested in helping me raise funds for PHA Canada. They generously agreed to the fundraiser, and on August 7th Menchie's helped raise $2000 for PHA Canada. Between all of my fundraising efforts I have raised a couple thousand dollars for PHA (US) and PHA Canada. I am so touched by the friends, family and strangers who have helped me raise money for Pulmonary Hypertension.

By now you probably have heard, and maybe even participated, in the ALS Bucket Challenge. According to the Huffington Post, the ALC Bucket Challenge has raised over $88.5 million dollars in a matter of weeks.This is truly amazing, especially because a large amount of funds have been raised in a short amount of time. I sincerely hope that the funds raised will help find a cure and/or better treatment as soon as possible. If you know about the ALS Bucket Challenge, you have also probably watched the heart wrenching video of a newly diagnosed 20-something year old male who was diagnosed with ALS this year. In the video he breaks down and describes the fear he has about the disease eventually taking over- unfortunately this is a fear that many of us with PH can relate to.

Another point mentioned in the video is that ALS is not a profitable disease. This is also another thing that those with Pulmonary Hypertension can relate to. PH was considered an orphan disease, but is now classed as a rare disease. Idiopathic Pulmonary Hypertension affects about 1-2 out of a million. Needless to say it is not a profitable disease, and therefore does not get nearly as much research funding as other diseases. From a sales point, there aren't enough sick people who will need to purchase anything made to treat or cure the disease. The cost of PH medications are also INSANE. I am so grateful to live in Canada where expensive medication can be eligable for coverage under the province. I have read stories by PHers who live in America and can no longer afford medication and are forced to stop taking it. While these medications cannot cure PH, they can slow down the progression. So how much is PH medication? Well, one of the "life prolonging" pills I am on is 40 mg of Cialis- yes that is a really high dose of boner pills. It costs about $20,000 a year Canadian. I am on a new medication that costs over $50,000 a year. How would anyone could pay for that without assistance? Especially if your disease has made it so you are no longer able to work.

Pulmonary Hypertension is a progressive disease and it eventually leads to heart and/or respiratory failure. There is also no blood test that can be done to diagnosis the disease. As the disease progresses, it becomes more difficult to breath and shortness of breath increases. Simple tasks like getting dressed, going up stairs, showering, walking to the kitchen become more difficult to perform.

Specialists diagnosis PH by process of elimination and then by a right heart catheter. I was kept overnight at a hospital so they could perform all the necessary tests. I can't tell you how hard I prayed that they would find a blood clot in my lungs (something I never thought I would wish for.) I had so many x-rays and CT scans done within 48 hours that the technicians did not want to perform anymore as it could be dangerous. They also performed dozens of blood tests on me, requiring over 30 viles of blood to rule out other diseases. No one told me that they hadn't found a blood clot on my last CT scan. Instead I was rolled (in my wheelchair) to another room where I had to perform a pulmonary function test. That is how I knew they hadn't found a blood clot and I started sobbing uncontrollably. This was inconvenient for the staff and the patients. They rolled me into the hall way facing a wall to cry by myself. All morning they just rolled me from room to room to do more tests. When everything came back negative it was nearly certain that I had Pulmonary Hypertension, the cause? Unknown.

Because of the word "hypertension" some people assume that I have a disease that I brought on by a poor diet, and that I could get better by not eating as many ribs covered in barbecue sauce. Pulmonary Hypertension is very different from regular hypertension, and unfortunately, it is often fatal. The average life span was 3 years. Now the average life span is somewhere between 3-7 years. Scary, right? I turned 26 in February. My parents decorated the house and did everything they could to give me a nice birthday. I tried very hard to enjoy it for them- but it was hard. I couldn't help but wonder how many more candles will I get to burn out?

On online support groups other PHers have been brain-storming ways to raise funds for PH that could be as successful as the ALS Bucket Challenge has been. One idea is that someone who is challenged must wear a clothes pin on their nose, and walk up the stairs while breathing through a straw in their mouth. I was fine with this idea until the stair factor was put in. Not having enough oxygen delivered to your organs is dangerous, which is why Pulmonary Hypertension is often a fatal disease. What other ways can we create a fundraising campaign that will go viral? Another issue is that Pulmonary Hypertension Month is the month of November. It is very difficult to think of something that could compete with "Movember" (people grow mustaches for prostate cancer,) especially before Christmas.

So why is the ALS Bucket Challenge so successful? I think the recognition for people who do donate is a large aspect to it. With social media, people who are challenged are placed under a microscope. Their "followers" will be waiting to see how they respond, and now they essentially have the world watching to see if they make a donation. It is a smart campaign. It would be hard for people in that situation to say no to making a donation and to taking on the challenge.

Some people have refused to donate to ALS because they test on animals. These people include Pamela Anderson who has cosmetic surgery, which was tested on animals and beloved Canadian singer-songwriter Grimes who is a vegan that was under criticism last year for eating Ben and Jerry's Icecream. Ben and Jerry's does not have vegan ice cream, but they do treat their cows ethically.

This is where I have an issue. An argument made by animal rights activists is "who is to say your life is worth more than animals?" I don't want to sound like an asshole by saying this, but I must admit that I think I am. I think most people who are going through a similar situation, or have a loved one going through the same kind of situation can understand that sometimes animal research does need to be done. I don't agree that animals should be tested on for cosmetic products- but if something could be life altering or life saving, I wouldn't be able to argue against. It is an unfortunate situation to be in and take a stance on, but I figured it would only be fair to give my view on it as someone who could benefit from animal testing. I know that animal testing isn't always successful, but who is to say it couldn't leave to a path of success?

Researchers have reversed Pulmonary Hypertension in rats a few times now using various techniques, one of them involves estrogen. I think researchers are so close to finding a cure! Research funds are desperately needed.

If you would like to quietly and graciously donate money to Pulmonary Hypertension Research please donate here. I would suggest donating directly to PH research, because when money is donated to an assoication it is often divided among other areas (paying for staff, awareness materials and so on.)

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