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.

Raising Funds

We are really excited about a project we are working on.  We are making SMA shirts as a fund raiser towards purchasing a converted van for Benson.  They are still in the works.  Tshirt designing is a little more tedious than I thought it would be!  When we have narrowed our designs down, I'll post them so you can vote.  You'll be able to purchase these shirts through the PayPal donate button on the blog or by sending a check to a donation account we set up in Benson's name at Guaranty Bank here in Springfield.  I can hardly wait to get these going.  Check back for an update!

Benson's SMA Story

The Tubie Drama

Photo credit childrenshospital.org

Last night we had a little tubie drama.  It has been four months since surgery for Benson.  The surgeon that placed his tube told us to have it changed six weeks post op and x-rayed to make sure the placement was correct and everything had healed such that the stomach was sealed off and nothing was leaking out.  The surgeons here do it a little different and said to just call for an appointment when we were ready to change it.  So we hadn't been to have it checked since surgery.
Last night, we were all done doing the bedtime routine and ready for the kiddos to crash.  I was holding Benson and got up to get a binki for Brigham.  I don't know what his tube got caught on but I somehow pulled his button right out.  I'm sure it hurt.  It had 2ml of water in the balloon so it wasn't like it just slipped right out.  But 2ml isn't enough to keep it secure because it should have closer to 5ml of water.  It was obviously time for a change, but for our first time something less emergent would have been nice.
I grabbed our foley catheter thinking we would need to go to the ER to get an Xray and check for correct placement.  We were told that we would have 30 minutes if it was ever pulled out before it would start closing.  THIRTY MINUTES! We put the foley in quickly but immediately saw we were getting stomach acid coming back so we started to wonder if we could just do the button ourselves. 
I attended a class at Primary Childrens explaining how to change the button and proper care.  I watched and listened, but I never did anything.  I never even pushed water in the little balloon.  Lucky for me, I have Joe Cool for a husband and medical emergencies don't phase him.  I was actually proud of myself for doing the foley catheter.  Even though I was shaking and even though it slid in way easier than the button.  But Jon did the button.  We slid the foley out, lubed up the button, and slid it in.  Then filled the balloon.  No ER visit necessary.  We listened to his stomach while pushing water and heard lots of good stomach sounds.  But even still I was slightly nervous and woke several times to make sure his night feeding was indeed going into his stomach. 
This morning Benson woke up at 10am.  I think the night's adventure wore him out.  But he was happy and said his tubie felt fine.  Although, he definitely didn't want me to touch it. I think I apologized 100 times last night, I'm lucky he forgives so easily.

Bath Chair

I feel like having a child with intense medical needs forces you to understand the health care system.  Whether one cares to be involved in politics or not, with something that so directly impacts your life, it is hard to avoid.  And while health insurance impacts everyone, health insurance for a child who needs regular medical supplies is a whole different ball game.  I am learning a lot about the health insurance world.  Most of what I am learning makes me sad and discouraged.  One of those moments was when I called to get a billing code for a bath chair.  It seems like a medical necessity to me.  Helping your child sit up in the bath so they don't drown seems important.  And eventually, he'll want to shower and will need a shower chair at that point.  I was really surprised to learn that there is NO billing code for a bath/shower chair.  It's not a medical necessity.  And they're $350+.  Why is all medical equipment so expensive?  I stewed over this for a while (months).  And then one day I thought to call Families of Spinal Muscular Atrophy.  And what do you know?!  They had one in the equipment closet.  They shipped it out that day and we had it just a couple days later.  Benson loves it and felt a lot more secure chillin in the bath!  We are so thankful to this organization for all they do for SMA families!

That Perfect Moment

 

I just smile every time I watch these.  I love how proud he is!

 

Nutrition Low Down

So deciding to get a "tubie" for Benson was a rough decision.  Surgery is a big deal and terrifying to a three year old.  Plus, there are always risks associated with going under the knife, so we had to be sure it was something we felt was absolutely necessary.  When Benson's weight was stagnating and his younger brother's was starting to crawl higher than his, we knew it was no longer "genetics" being the only reason for his low digits.  And when your son drops off the growth chart, <3rd percentile is considered Failure To Thrive.  Ouch, that one hurts.  So enter gtube.  I think I imaged getting the tube would be the end of our feeding drama.  Before the tube, I was constantly trying new recipes, trying to find something ANYTHING!  that would load in the nutrients and Benson would love as much as candy.  He's kind of got a sweet tooth :)  But, little did I know, it was only going to get messier

 Yep.  Literally.  We left the hospital with one formula, tried a new one, then another, then switched back to the second, then decided we had to have pureed for fruits for...ahem....regularity.  And that is where we're at now.  Trying to find the right balance of what to puree and which formula.  Insurance only complicates matter since they aren't so generous with their formula offerings.  But I still haven't explained this pix.  Right now, our routine goes like this.  Benson goes to bed, I stumble into the kitchen and mix up whatever fruity goodness we have in our new Blendtec (best and most useful Christmas present to date!)  Then we use this awesome contraption to do a gravity feeding with "the thick stuff."

This was invented by my dad and brother in law.  This is just the prototype.  Don't worry, you'll hear about it when it's the real deal.  It's going to be awesome.  Anyway, after that I hook Benson up to the Kangaroo Joey pump and do a slow drip all night.  The mess is from trying to keep it dark enough that he doesn't wake up while light enough that I can see.  And, awake enough that I don't pour the mixes into his syringe like a drunk from sleep depravity.  I'm getting better at getting his mixes right so that is cutting down on time significantly.  Sometimes it has taken me over two hours to do 8 ounces!  But this last week, I think I only had two minor spills.  Progress baby!
So, why is nutrition such a big deal?  My other kids can survive with minimal nutrients.  Why is it such a big deal for Benson?  There are a myriad of reasons, all very convoluted and interwoven into the one main problem with SMA.  His muscle is literally wasting away.  How do you swallow?  Muscle.  How do you digest your food?  Muscle.  Weight bearing makes your bones stronger and how do you stand?  Muscle.  See my point?  Muscles are a big deal.  Yes, people think of SMA and think of a wheelchair.  But that is just the thing that you can see, not the reason these kids end up in the hospital fighting for their life. 
So, back to nutrition.  When you are in a fasting state, your body breaks down skeletal muscle for energy.  SMA kids don't have enough for that to happen so fasting is a no-no.  There are also some lesser-understood problems with fat metabolism.  It is most likely related to a weaker digestive tract so the intestines simply can't break the food down and get it out.  Constipation is a prevalent problem.  A lot of kids do what is called an amino acid diet which is basically a vegan diet.  But as all diets go even with healthy people, it's tricky to nail down all the bits and pieces for each individual person. 
Since getting Benson's gtube and getting him better nutrition (though it definitely still has room to improve) we have seen huge improvements in his strength.  In fact, he did a first EVER just the other day.  He was sitting on the steps of the therapy pool about chest high in the water.  He held onto the side and pulled himself to standing.  It was a perfect, beautiful moment.

Benson

THE SMA LIFE
Benson was diagnosed with Spinal Muscular Atrophy type 2 at 17 months.  We started asking questions at 9 months but it took 8 long months to get answers.  Benson started scooting at about 9 months but wasn't bearing weight or trying to stand.  During the time that we were trying to get a diagnosis, we pursued physical therapy and did everything we could to encourage use of his muscles.  By 19 months he had almost completely stopped scooting.  This coincided with the timing of his first wheelchair.  His first wheelchair was a gift of many donations from friends and family and we felt truly blessed to have it.  It is an amazing little chair that is only 8 pounds.  Yes, eight!  It is manufactured by a company in Sweden and is hard to find in the states but we were blessed every step of the way to getting this chair.  Life continued on for the next year.  Benson continued losing strength and wasn't gaining weight.  It was finally time to get a feeding tube placed.  He was eating more than enough calories by mouth but for reasons no one can yet explain, SMA was preventing him from gaining weight and absorbing all the nutrients he so terribly needed.  In November 2013, Benson had his first surgery and received his gtube.  We call it his tubie.  It made him very nervous at first but now he seems to like it.  And sometimes he is very proud to show it off.  Another huge milestone for Benson was getting his power chair.  He loves his wheels and he loves loves loves to go fast.

THE REAL BENS
Benson was nicknamed Bens by his sister and cousin.  It stuck and is as unique as he is.  Benson is an amazing little guy.  He is incredibly smart.  He had IQ testing done and is above average in all areas but was in the 90th percentile for memory.  That memory of his will serve him well throughout his life.  He remembers everything.
He inherited a Brady gene for remembering and quoting movie lines.  He quotes movies to me all day long.  He is currently loving Ninja Turtles, but he is also a big fan of Wild Kratts, Super Why, and My Little Pony.  Although somewhere in the last few months he caught on that this is a girl movie and protests when its on even though he secretly likes it. 
Benson loves cars.  He likes the Disney Movie cars but his favorite character is Jeff Gorvette, not Lightning McQueen. He also loves Hot Wheels and all cars that look fast to him.  He also shares his dad's love of airplanes.  He has a collection of Hot Wheels and Maisto airplanes.
Benson loves to play hide and seek, tag (either in his power chair or being carried), and jumping on the tramp (we hold him).  He likes to play with "little things."  Little objects collected from various games and toys.  His favorite game is Connect 4 Launchers.  He also loves playing games on the iPad.  Benson's most favorite activity is throwing rocks in lakes and ponds.
Benson has been blessed with two very sweet and crazy siblings that are both 18 months younger and older than him.  They all love each other desperately and pray every day for Benson's "SMA to be gone."