World Down Syndrome Day Awareness Walk

Our new group, Down Syndrome Advocates in Action Nebraska is hosting a mall walk for to raise awareness for the upcoming World Down Syndrome Day. #wdsd16

Ben's Brigade will be there and invites you to join us on March 19, 2016 at Gateway Mall in Lincoln NE between 9:30 and noon and walk laps in the mall.  In order to qualify for the raffle you need to wear a shirt or button that promotes Down syndrome awareness.  Register for the event here.

You can wear a shirt or button you already have or wear a new World Down Syndrome day long or short sleeved shirt or button.  The deadline for pre-orders has passed, but a few extra short sleeve shirts of each size were ordered.  Email bensbrigadene@gmail.com to see if your size shirt is still in stock.   Buttons can be ordered until March 12, 2016 .  Proceeds from the sale of these items go to DSAA Nebraska.

$14

$17

We also have a few Ben'x Brigade shirts available too.  These short sleeve shirts are $10 each.  Contact me to see if I have any left in your size.

$10

We hope you can join us, but even if you can't, we hope you can celebrate World Down Syndrome Day on March 21, 2016 where ever you are. #WDSD2016 

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Do You Know Where your Fundraising Dollars are Going?

Many families who have a loved one with a disability work hard to fund raise for local and national organizations.  We feel compelled to make life easier for those families who are starting a new journey, that for us, has been a normal course of life for many years, and think that by giving money to a non profit, that task will be accomplished.  But do we really know where that money is going?

It is fun to get caught up in the contest of it all.  Raising more money than team x, and earning incentives for fundraising can be exhilarating, but is the money raised really going to help our kids? 

While most groups do a good job with helping out families with a new diagnosis, once the kids get older, the support dwindles down to the planning of social events for kids, like a night out at the movies, an afternoon at a swimming pool, or a holiday party, or maybe a parent outing. While these events are fine and a necessary part of group networking, the amounts budgeted for this usually only account to somewhere between 10-20% of the budget.  So where is the rest of the money going? 

As family members and fundraisers, we not only have the right to know, what organizations are doing with the funds we raise, we have the responsibility to ask questions and hold the group leaders accountable for upholding the group mission. 

I have been on the inside of quite a few non profits, church and school groups as a board member, committee chair, and volunteer, and what I have seen has been truly eye opening.  Some fundraising companies that market to schools give our kids pennies on the dollar to market their products, while they record huge profits.  Instead of buying that $20 wrapping paper or chocolate (that you did not need in the first place), why not just donate the $20 straight to the school?  Other groups try hard, but just don't have the leadership necessary to take the group to the next level.   If you feel strongly: speak up, volunteer, offer advice, make suggestions, be heard.

So, as we head in to the end of the year, and the fundraising season, ask questions before you donate.  Do a bit of research before you fund raise.  What will this money be used for? If there is a program or service that you feel would benefit the group, let the board or committee know.  Don't just give and remain silent.  If you have been asking, and no one has been answering, it should be a huge red flag.  Make sure the group you choose to donate to is going to be a good steward for the money you work so hard to make.  You deserve to have a group that meets the needs of your family.  There are plenty of groups around that are doing it right and making a real difference for those that we love. 

If no one can answer your questions, or respond to your suggestions, it may just be time to find a new group to support.

To find out more about the group that Ben's Brigade is choosing to support this year, go to http://bensbrigade.weebly.com/

UPDATE:  Apparently some groups don't like when people encourage others to stand up for what is right and hold the group accountable to follow their mission statement.  We planned to walk with our local Down syndrome group to celebrate Ben, even though we were donating to a different group.  Unfortunately, our local DS group deleted our walk team and have not responded to any of my emails.  Any group that would exclude a child with Down syndrome from a walk that is supposed to be a celebration for them, is not a group that is being supportive to it's members.  The new board is making a clear statement.  They do not provide support for individuals with Down syndrome, their families, friends, etc.  They only provide support to those individuals with Down syndrome who's families don't rock the boat, don't ask too many questions, don't make suggestions to try to move the group to the next level.  

Just one of the crowd

One of the awareness campaigns of the National Down Syndrome Congress is the More Alike than Different campaign.  These ads emphasize that individuals with Down syndrome are more like the general population, than they are different from them.  But even when you have a crowd of people who are all very similar, certain people stand out.  

Ben stands out for a few different reasons:

He has a great smile, 

He is either overly enthusiastic about what he is doing, or he is on the floor refusing to budge.  

He stands out when he uses sign language.  

He stands out because of his personality.  

He stands out when he cheers for any team that scores.

He stands out because of his looks.  

He stands out whenever he shares his awesome laugh.

He stands out when he moves to the beat of his own drum.  

 I think this last line is what this quote is all about.  Ben enjoys life.  He does not play to win.  He plays because it is fun.   Fun and laughter make this world a happy place to live. 

Recently I read a new quote that went something like this.  God created Down syndrome to offset the large amount of boring people in the world.  I don't remember where I saw it, but it is so true! Ben takes all the boring out of the most every day.  So what if he stands out, so long has he does it with style.  

October is Down syndrome awareness month.  

The new Ben's Brigade website is up and running.  Please check it out to donate or purchase Down syndrome awareness items.  This year all proceeds will go to the LuMind Foundation for Down syndrome research.  

The Scenic Route

I can't agree with this statement more.  Since Ben was born, we have met amazing people, learned so much, and gone places we never would have gone if we had not had Ben.  The Down syndrome journey is not one I had planned, and we got at a much slower pace, but I sure do love my tour guide!

Scientific Fact?

I not sure how scientific this fact really is, but it sure rings true with me.  I have had the honor of meeting so many awesome individuals at the NDSC convention over the last three years,  and the main thing they have in common, is an extra 21st chromosome. 
This year I got to have a booth next to Timothy from California.  Timothy knits his own scarves.  I know, because I saw him do it.  As a fellow yarn lover myself, I felt an instant connection with him.  We are hoping to see him and many other members of our Down syndrome family next year in Orlando!

Thank you for Supporting Ben's Brigade!

Thank you to everyone who helped our family raise over $1,600 This was my final year of chairing the event.  The Down Syndrome Walk has grown significantly over the last 4 years that I have been involved.  I am proud to be part of a group of parents who worked together to grow the group to the organization it is today.  However, all the change and growth experience did not happen with out a lot of hard work, and I am ready to pass on my part of that job to others.  
Here are some photos showing the fun we had on Saturday.

Ben's Brigade2013

This past weekend was our awareness walk.  This was my second year of co-chairing the event, and I admit the job is not getting easier.  I know that seems odd because things tend to get easier the more you do it, and while I agree that is true most of the time, for me it was not.  Second the reason the job got so much harder, is because during the last three years that I have been involved, we have doubled the size of the walk in terms of both money raised and total walkers.  It has been great raising more money and having more walkers.  However, ordering and sorting 1600 t-shirts is a whole different ball game from sorting 750 shirts.  It all requires more volunteers, and those are harder to come by.  But in the end getting bigger is a good problem to have.

We are very proud of our team who continually comes out and supports Ben's Brigade (even on cold mornings like it was on Saturday)  Through fundraising we were able to earn three fact posters that were displayed along the walk. 

 

Ben enjoyed seeing himself in the photos.  

We are always happy to welcome new team members.  This year we were able to welcome a few of Ben's Kindergarten classmates.  I am just sorry that my duties as walk chair prevented me from doing more socializing with my team.  We were also sorry that John had to attend the Harvest of Harmony parade with the school band and had to miss out.  For the first time we were unable to take a family photo at the walk.   Thank you for everyone who supported Ben's Brigade!