What I've Learned in the Last Month About Donating to Charity

...And Where to Donate to SMA.  If that's all you're here for, just jump to the bottom.
The recent success of the ALS ice bucket challenge has been phenomenal.  But I have been surprised by all the articles popping up on Facebook as well that are slandering the ALSA.  I guess no one can stand for an organization to get such wide spread attention without feeling the need to dig up some dirt.  So it made me start doing a little digging of my own.
To be honest here, I have never really done much (if any) research on different organizations.  But in the two years SMA has become a part of my life, that has started to change.  And the last month has brought a completely new perspective for me.  I am by no means an expert and I am still learning a lot.  I am sure there is better advice out there, but here are a few things I have learned.
#1 Dig up your own dirt. 
I found that a lot of the articles about ALSA were misleading.  And the headlines definitely made it sound worse than it was.  Before you go believing any article on the web, check their sources.  Also go to the website of the organization and look around. Most charity rating sites require tax documents being tied into the webpage somewhere for the organization to get a good rating.  I only found one site with them.  Although that doesn't mean they aren't there.
I found this website to be the most helpful for a breakdown of the organization's finances.  However, it didn't have many of the small organizations that I am aware of for SMA.  So it is not a complete list.  But it covers the "big" ones.  When you are looking at a particular organization, if you click on the link of "full report" it brings up details of their finances.  It lists program expenses and how much went to each area.  It also has a handy little graph at the bottom to show approximately what percentage went to programs, fund raising, administrative, and other. 
I have found it interesting to peruse the salaries of the CEOs for these organizations.  After reading an article stating the CEO of MDA made over $350,000 I was floored.  I didn't think a non-profit would have such a well paid staff.  But I guess CEO is still CEO, even if it's non-profit.  Imagine my surprise when I saw that the CEO of the American Cancer Society had a cool $2.4 million in total benefits in 2012.  However, I should add that the most recent tax statement online for them was 2011 and it said he only had a salary of $832,000.
#2 Read their Mission Statement
I found this article particularly harsh regarding the ALSA.  However, if you go back and read the mission statement of the ALSA, it states that their mission is care, support, and research.  So no, obviously 100% of their funds are not going to research but that does not make them a fraud.  It makes them fulfilling their mission goals.  Support for families is a big part of most organizations' missions.
#3 What are you most passionate about?
Research? Care? Awareness? Prevention? Most organizations set up for a particular disease are going to cover care, support, and research with their funds.  If you want your money going 100% to research you are most likely going to have to find a lab doing research for your disease.  There are over 200 universities within the United States classified on Wikipedia as having high to very high research activity.  It may take some googling, but I am betting you can come up with a university or hospital doing a study on the disease you want to give a donation.
#4 Ethical Objections
When it comes to research, I think of embryonic stem cells.  They are an ethical battleground.  This article was opposed to donations to the ALSA because they gave funds to a clinical trial that used embryonic stem cells.  This is such a personal opinion matter that only you can decide how you feel about donating.  I know that CureSMA (the largest SMA organization) is not currently doing any stem cell research but, when you donate to them you can specify that you don't want your funds being used for stem cell research.  This may be true for other organizations as well if you were to contact them.
However, there are other areas to consider as well.  There is a huge movement within the SMA community for everyone (like everyone planning to have a baby) to get tested for carrier status.  It is not something I am passionate about and don't feel it a useful part of funding.  Totally a personal thing.  I was also turned off by another organization that took a stand on a political issue I strongly disagreed with. 
#5 How much of your dollar goes to the cause?
MDA's site says that 77 cents of every dollar goes to their mission to fight muscle disease. The Gwendolyn Strong Foundation is completely volunteer and says that 100% of funds go to SMA. Other sites, like American Cancer Society, I couldn't find a simple statement of how much of donations fight the cause, however, they had their tax documents linked on their site.  So if you are an accountant, you can figure it out yourself. 
I think there is a lot to be said for donating to a "big" name charity because it's quick and easy.  Most people don't have a ton of time to spend finding and researching smaller, local chapter charities.  Charity is charity and whether it's 77cents of your dollar or all of it, it is going to make a difference.  If you know someone that is involved with a particular disease, they most likely have the inside scoop and can tell you the small organizations.  And that is what leads us to my inside scoop.

In my opinion (and definitely biased, that's why it's my opinion) the best places to donate to SMA:
For pure research: The Kaspar Lab
For research, care, and support: CureSMA

I Believe in Miracles

Having a son with a very obvious physical disability and living in the Bible belt, I hear at least monthly something to the effect of "miracles happen" or "God heals."  I don't believe God will heal my son.  But I believe in miracles.  Being born, raised, and believing in a faith with every fiber of my being that has the restored priesthood- the same priesthood Christ used to heal the sick and raise the dead- I have no doubt God has the ability and the power to heal my son.  Usually when someone tells me to have faith and believe in miracles, I smile and nod.  But my heart wants to tell them of all the miracles we have seen; though they haven't included him miraculously taking up his bed and walking.
I would tell them of when we were first trying to figure out what was wrong, how the Lord guided and directed our decisions, how he lead us to the right doctors, and how he protected our hearts from utter devastation.
I would tell them of his early ability to communicate.  How he has been blessed to tell us what he needs since he was 18 months, around the time he lost all ability to crawl.
I would tell them of all the people that have reached out to help, how their small contributions of both time, money, and equipment has made it feel like we are less alone; has taken away some of the weary and strain.
I would tell them of the miracle of getting his first manual chair.  How we were in school and could never afford a $5000 chair.  But how we found someone willing to sell one for just $2200 and then our family all chipped in and helped.
I would tell them of days of sickness, when he is coughing and choking and I feel the fear in my heart.  Of God's comforting arms for me and quick healing for my son.
I would tell them when surgery was just two days away.  Stomach flu was dropping everyone around us like flies, myself included, and Benson got a fever.  A priesthood blessing, a nap and four hours later he was fever free and surgery went as planned.
A surgery that was decided on by much prayer and fasting; a gtube- which enabled us to give him better nutrition and brought back strength he hadn't had for months.
I would tell them of days when my heart hurt so much I didn't know how I could go on but found strength in my husband, my children and my God.
And I would tell them of Benson's own prayers.  Of his power chair breaking but working again, if only for Halloween.  Prayers to get better when sick.  Prayers to be strong.
So yes, I believe in Miracles.  My life is a daily witness to them.  And I thank God every day for the miracles he sends me.

Shirts Update

We are so grateful to everyone that has ordered shirts.  We ordered 100 shirts and are down to just 21.  We still have most sizes, but we are out of a few.  We are also considering ordering some XXL and XXXL.  I'll update if/when we get them.  But for now, here are the sizes we currently have. A lot of them we just have one left.
2T, 3T, 5/6T, Youth Small, Ladies Small, Ladies Medium, Ladies Large, Ladies XL, Men Small, Men Medium.
Remember if you aren't local, it would be much appreciated if you would include shipping in your total cost.  We are asking $3 for the first shirt and $1 per additional shirt.  You can use the paypal button at the top left or the shipping address and mail a check.  Details about each donation method are in the post below.
Thanks again to everyone who has been supporting and helping us!

Shirts!!!

We have shirts!  And they are awesome!  

Now, here are the sizes we have:

2T

3T

4T

5/6T

Youth Small

Men Small

Men Medium

Men Large

Men XLarge

Women (Junior Cut) Small

Women (Junior Cut) Medium

Women (Junior Cut) Large

Women (Junior Cut) XLarge

And Prices:

Adult $20

Youth/Child $15

Shipping $3 + $1 per additional shirt

If you want to order a shirt you can do so through the donate paypal button to the right.  OR you can mail a check to his bank account.  See below for address.  The adult sizes are $20 and kid sizes $15.  Shipping is kind of tricky but I think the easiest way to do it is $3 for the first shirt and $1 per additional shirt.  I am trusting all of you to do the math correctly, I feel pretty good about letting you know if you overpaid but asking for more money may make me uncomfortable :)  Please leave the details of sizes in the comments when you pay and make sure you leave your address for shipping.  If you are local, I'll bring it to you!  No shipping!  Yaya!

So here are the dirty details on why we chose paypal for Benson's fund raising.  We set up a non-profit account through paypal and linked that with a medical fund account at our local bank.  If you are on facebook, you probably see people doing medical fund raising through sites like gofundme.com or giveforward.com.  These sites are really popular and make it clear that you are raising money for medical reasons.  However, their fees are around 8%.  And I don't know about you, but when I donate money to something, I hate when the middle man gets a cut.  Paypal still takes a fee, if you use a debit or credit card. However, their fee is 2.7%.  AND, if your paypal account is linked to your bank account and you pay that way, there is no fee.  So, while paypal is a different way of going about it, we felt it gives more bang for the buck.  And, if the 2.7% bothers you but you don't feel comfortable linking paypal to your bank account, you still have the good ole paper check through snail mail.  It is tried and true.  When you write your check, make sure that it says that it is to: Donation Account for Benson Brady.  And send checks to

Guaranty Bank

1510 East Sunshine

Springfield, MO 65804

We didn't order Youth Medium due to some oversight.  Sorry for the inconvenience.

If you have any questions regarding sizing, shipping, or totals; send me a message or comment on this post and I'll get back to you asap.

Equipment Links

This is Benson's closet which is overflowing with medical equipment (and blessings).  Benson needed some equipment for his tube that our insurance could only provide at an outrageous cost.  So, I started searching around for other sources and thought I would share some of what I found in case someone else might need help.
A great source for equipment from other families is on Facebook.  There are at least three groups that I know of.  People will either post something they have or people can post something they are looking for. It is not always free, because sometimes families had to pay co-pays themselves and will ask for that payment back.  But sometimes they got their supplies from medicaid or medicare and you only need to pay shipping.  I did get burned one time using this method because she told me shipping was $15 but when I received the item it was definitely only $3.  I guess if she has a child with special needs, at least it went to someone with a lot of medical bills.  Anyway, use caution here.  Most times, people are honest.
Project Sloopy was able to donate 30 infinity pump bags, at no cost to us!  These bags are donated to their organization by families who have a surplus and then they ship them out to whoever needs them!
The Parker Lee Project is a similar foundation to Project Sloopy.  They send out donated equipment to families.  They received the exact pump that we were looking for and sent that to us along with 30 bags!  Coincidence?!  I think not!
The Oley Foundation works a little different.  People contact them who have extra equipment and they put you into contact with people that have the supplies you need.  All equipment is donated, you just pay shipping!
Rehab Equipment Exchange is another site that I am going to throw out here.  This site has a different kind of equipment, but it's equipment none the less.  I haven't gotten anything from this site, but I have browsed it many times.  I'm including it just in case it helps someone else out.

New Stander

 This stander is the Standing Dani, the first stander we got for Benson.  It was all the rage in the SMA community at the time we were in the market so we pushed hard for it.  But, it wasn't a great fit for Benson.  We've been making it work for the last year and a half but last week we were able to get a new one.  This one came from the MDA loaner closet.  We happened to hear they had a few in the closet.  Standers are tricky to pass around sometimes because they are often custom adjusted.  But this one fit Benson like a glove.  It's so much more supportive and I feel a lot better about his stander time!  It's ginormous, as all equipment seems to be, but whatever gets the job done, right?!  We have felt so blessed lately to have so many pieces come together for Benson's medical needs!

Unite 4 Peyton

We were very fortunate to be recipients of a grant through the Unite 4 Peyton Foundation.  All SMA families should check them out.  They do annual fundraisers and then apply that money towards grants for families with SMA.  I think it is absolutely awesome.  Our request was for hippotherapy, which is not paid for by insurance as it is still considered "experimental."  So far, we have been to two appointments and Benson is loving it!  He also tells people all the time that he rides horses.  His sister is terribly jealous, but she is being a good sport being supportive and letting him have "his thing."  We feel so incredibly blessed to have this opportunity for Benson.  I am very humbled by the hard work of this family and their generosity.  Their daughter, Peyton, has SMA type 1.  They know all to well the time and financial responsibility that SMA brings.  What they are doing is amazing and definitely most appreciated by us.

Hippotherapy is awesome.  It is something I have been passionate about since I first heard of it.  You can read more about it at the American Hippotherapy Association.  Here is a snippet of what they say:

Hippotherapy is a physical, occupational, and speech-language therapy treatment strategy that utilizes equine movement as part of an integrated intervention program to achieve functional outcomes.Equine movement provides multidimensional movement, which is variable, rhythmic and repetitive. The horse provides a dynamic base of support, making it an excellent tool for increasing trunk strength and control, balance, building overall postural strength and endurance, addressing weight bearing, and. motor planning. Equine movement offers well-modulated sensory input to vestibular, proprioceptive, tactile and visual channels. During gait transitions, the patient must perform subtle adjustments in the trunk to maintain a stable position. When a patient is sitting forward astride the horse, the horse’s walking gait imparts movement responses remarkably similar to normal human gait. The effects of equine movement on postural control, sensory systems, and motor planning can be used to facilitate coordination and timing, grading of responses, respiratory control, sensory integration skills and attentional skills. Equine movement can be used to facilitate the neurophysiologic systems that support all of our functional daily living skills.