There’s a video doing the rounds on the Internet about a little 4-year-old girl named Eliza who was diagnosed with the rare Sanfilippo Syndrome. The video is not only in aid of raising awareness, but raising much needed funds to save this little girl’s life and so that a clinical trial can be conducted to hopefully make the treatment more assessable to future suffers of this disease.
Have you seen the video? I have embedded it below for your viewing.
Like so many of these rare genetic disorders and diseases, videos hoping to go viral will be created and stories will be written that the organisers will hope are shared over social media in the aim of getting the message out to as many people as possible. That goes without saying.
And just as this video did, there will be a plea from a cute little child that the organisations and foundations for these disorders and diseases will hope guilt the viewers and readers into donating. Just as attractive models are used to sell the latest fashion line in advertisements, cute children who are orphans, homeless, living below the poverty line or struck by rare genetic disorders are used to promote charities.
That’s not a criticism, that’s the truth.
After I watched the video I felt compelled to donate, but as I reached for my credit card a feeling of déjà vu overcame me. Hadn’t I already donated to this cause? If not, hadn’t I just donated to one very similar?
I have had the beginnings of this story in my drafts since August 2013 but have been looking for the right way to write this. Yes, I’ll be honest, I have been looking for an angle in what will soon become seemingly clear; this post of mine is questioning which charities are worthy of our money.
I am not against asking the public for donations. Give what you can I say. I do. We do, as a family. My wife is very generous. I will admit that it used to annoy me that she’d never say no to giving a charity, but I have changed my tune since having children.
We currently have automatic payments that come out of bank account straight into the Red Cross and Careflight. These are monthly payments of $25.00 and $15.00 respectively, with the former being set up by my wife and the latter a charity that I signed up to be an ongoing supporter of. So that’s $40..00 per month or $480.00 per year that we have set aside as ongoing payments to charities.
In addition to that, whenever there is a natural disaster and a charity is set up, I will always donate between $50.00 and $100.00 and every year Channel Nine holds an appeal through the Children’s Hospital and I always give $100.00 on the day to that so that their total funds looks impressive by the end of the telecast.
Further to that, we often go in charity organised fun runs or walks and nominate a charity of our choice to have the donation part of the entry fee go to. And I can never leave a shopping centre with spare change in my pocket, rather I look for those people collecting for charities or at the very least, give a few dollars to the buskers at our local town centre (not a charity, but still a charitable thing to do, I believe).
On those days that are designated as a very public and well known charity day – Red Nose Day, Jeans for Genes Day, Bandage Bear Day, Daffodil Day and Red Poppy Day to name a few – I generally buy the badges, novelty items or flowers to support the causes, and throw an extra dollar or two into the collection box.
One other form of charity fund raising that we are regular participants in is the RSL Art Union’s Prize Home Lottery which can be a rather expensive lottery/charity to constantly donate to/buy a “winning” ticket for, but those prizes are very tempting, and who wouldn’t want to win a million dollar house on the Gold Coast? Besides, the money is for a great cause.
But it’s not about the winning (well it is in the case of entering the RSL Art Union’s lottery), but all of these charities are ones that I feel connected to in some way, and for many, it has been this way even before I had children of my own.
But what makes you want to donate to a charity? Do you need to be personally involved with it, have a friend or family member who is suffering from this disorder, affliction, disease or misfortune in life?
I have a friend who I went to high school with. After school, like many people I went to high school with, I lost connection with her until we reconnected through Facebook many years later. I mention her because one of her daughters has Prader–Willi Syndrome (PWS) which like Sanfilippo Syndrome is rare and mostly unheard of, and until she started promoting on Facebook the organisation and charity that she is involved with, I hadn’t heard of it myself.
Her husband competed in one of those fun runs that give part of their proceeds to charities and he also created an online account raising money from friends, family and colleagues by inviting them to sponsor his efforts, all in aid of his nominated charity. I decided to donated $25.00 which is far less than the amount it would have cost me to enter the fun run myself which I had fully intended to until my wife decided that seeing I was the last of the two of us to be in the event when she was pregnant with our first baby, it was her turn. And seeing that she hadn’t signed up for a sponsorship to donate to a charity, it was clear that supporting a friend, or the loved one of a friend would be a good idea.
Celebrities such as musicians, actors and sports stars are often known for getting behind charities. Many create their own foundations which they set up to promote their cause, and to give them something to do outside their chosen profession, and to continue doing in retirement (well, the sports stars at least). Glen McGrath and his McGrath Foundation which raises money to place McGrath Breast Care Nurses in communities right across Australia would be one of the most famous of these foundations.
Rather than setting up their own charities, many celebrities become patrons to existing charities. Former Rugby League now Rugby Union convert Craig Wing is the patron for Down Syndrome NSW organisation.
The world famous children’s music group The Wiggles are collectively patrons to many charities and foundations, with current and former members being individual patrons to other organisations. The Wiggles are associated with Australian Children’s Music Foundation, Australian Literacy and Numeracy Foundation’s Indigenous Literacy Appeal, CARE Australia, Children of East Timor, SIDS and Kids (Red Nose Day), St Vincent de Paul Society, Starlight Children’s Foundation, UNICEF and more recently Anthony Field (the blue Wiggle) becoming the spokesman for Anaphylaxis Australia.
It would come as no surprise that amongst the list of organisations that The Wiggles are associated with you will find that all are to do with children’s charities and foundations. I would expect that many of these organisations would have approached The Wiggles in order for them to help promote these causes off their good name amongst the general public.
But when it comes to certain charities and foundations it would also come as no surprise to find that many celebrities have a vested interest in these; Glen McGrath’s wife dying of breast cancer, Craig Wing’s sister having Down’s Syndrome, Anthony Field’s son Antonio has an allergy to nuts, and Anthony’s brother Paul Field (manager of The Wiggles) having lost a daughter to SIDS.
Of course when something affects you personally you would no doubt have a strong connection to the cause. You would feel compelled to first and foremost help your own child (in the case of the parents raising money to save little Eliza), bring awareness to a preventable or curable disease or life changing event (as Daniel Morcombe’s parent have with The Daniel Morcombe Foundation), and help those who are less fortunate and going through a crisis which is the aim of The McGrath Foundation. But when you are not personally involved, when your children are healthy, when you are fortunate to have good health yourself, how do you decide where to spend your charitable dollars?
My friend who has the daughter with PWS spoke candidly with me about her involvement with the Prader-Willi Syndrome Association. I asked her about her knowledge of the syndrome before having her child diagnosed with PWS and surprisingly she knew a family friend who had a baby boy with the genetic disorder almost 20 years ago. Although she spoke to friends about the symptoms this little boy faced as he grew older and therefore was subconsciously promoting awareness, she admitted to me that she was more of an environmentalist back then so organisations like the World Wide Fund for Nature (WWF) were more in her sights.
So with all these charities out there, the household names like environmental group such as Greenpeace and the WWF, those raising money for research and spreading awareness of diseases and disorders, and those simply collecting for their own needs, where do you put your money? How do you decide?
I don’t want Eliza O’Neill to die or suffer just as much as I don’t want my friend’s child to have people unaware of her situation, and I don’t want either of those causes to be regarded as any more or less important than clothing, feeding and housing those less fortunate than you and I.
I have my own family. I have my own kids. We live within our means and our means are not as big as we would hope they could be. But when we can afford it we are happy to give what we can to those who are in need.
We are not in the situation like Bill and Melinda Gates who have donated US$38.3 billion (as of 30 June 2013) through their foundation, or those other billionaires involved in The Giving Pledge which is a campaign to encourage the wealthiest people in the world to make a commitment to give most of their wealth to philanthropic causes.
But if I had all the money in the world you know that I would keep giving until I could give no more. And I am sure you my dear reader as well as many other people would too.
I have already asked the question at least three times throughout; how do you decide? What are the charities you support and why do you support them? I will admit there are also some that I no longer support for various reasons including fraud, dishonesty, misappropriation of funds and the continual support of child molesters within their ranks. Are there any that you would not support for any reason?