Friday, January 29, 2016

Now He is "Official"

Last week at the basketball game in Milford, Ben went up to one of the referees all by himself,  shook his hand, and "told him a story".  While we were not exactly sure what Ben was trying to tell him, we explained to the ref that Ben likes to pretend he is a referee at games and at home and even has his own shirt. Just before the boys game, that same ref came up and asked Ben to come down to him. He gave Ben a little bag that had an official referee patch in it. Ben was excited but was bummed it wouldn't stick to his shirt like a sticker.  The ref told Randy that he would be in Murdock tonight for the varsity games so we laid out a plan for Ben to wear his shirt, with his new patch.

With the patch now on his shirt, Ben made his way down to the court to meet the referee again.  Ben was a bit more shy tonight, but did pose for a photo with his new referee friend.

The kids were excited to get a visit from Nitro.  Of course Ben had to hold his hand and get a hug.

Since it was the last regular season home game, it was also Parent's night so the boys were all lined up.   It was nice to get a photo of the varsity boys who used to play Small Fry Basketball for Ready Mix Concrete all together.

Ben finished the night by taking about 100 selfies on my phone.  Most of them look like this.  I should have know from all the giggling that he was up to something.  

When I figured out what he was doing,  we took a selfie together. 

It was a fun night of basketball!

Monday, January 25, 2016

World Down Syndrome Day 2016

World Down Syndrome Day, March 21, 2016 will be here before we know it.  March 21st was chosen to be recognized as  World Down Syndrome day because of its date 3-21, to represent the 3 copies of the 21st chromosome that individuals with Down syndrome possess.  #wdsd2016

This year Ben's Brigade is kicking off our fundraising efforts a bit early to help celebrate World Down Syndrome Day.  We created our own new design, because we wanted shirts in the traditional awareness colors of blue and yellow that were not dated, so they could be worn every year on March 21st. We also wanted a design that's sole purpose is to promote Down syndrome awareness and not advertise for any specific group.   This design will be offered on both long and short sleeve t-shirts and 3.5 inch photo buttons available with a pin or magnet backing.  Click here to access a printable order form.  Deadline to order t-shirts is February 22, 2016.  Pre-ordered shirts will be available after March 10 for free pick up in Lincoln, NE or can be shipped to you anywhere in the United States for a small fee.  Proceeds from the sale of this shirt will be donated to the newly forming Down Syndrome Advocates in Action group.  We would love it if you would share this post with anyone who might be interested in promoting positive Down syndrome awareness on World Down Syndrome Day.
Thank You!

Happy New Year

While I understand the New Year happened over 3 weeks ago, I am just finally getting around to making a blog post about it.  Unfortunately with all the other types of social media, the old blog, is among the last to get updated.  But I do want to continue to share information and news about Ben with all of our readers in 2016.  Thank you for sticking with us this long, and I hope to have more to share with you in the upcoming weeks and months!  But until then, we hope you are enjoying basketball season as much as we are, and 2016 too. 

Saturday, September 19, 2015

Why are we fundraising for the LuMind RDS Foundation this year?

This is why. 50% of individuals with Down syndrome will develop Alzheimer's by the time they are 50. That is a scary statistic. 
Here is another. 
Children with Down syndrome can begin developing the pathology of Alzheimer's Disease as early as 
8 years old, including the formation of beta-amyloid plaques and neurofibrillary tangles. Researchers are working on a drug to help prevent the pathology of Alzheimer's from forming. 
Additional funding is needed to move this research forward. Please consider donating in honor of Ben's Brigade for Down Syndrome Advocacy or in honor of your own loved one with Down syndrome.
Click here to watch a video from report by Maria Shriver regarding the connection between Down syndrome and Alzheimer's Disease.  

Sunday, September 13, 2015

Ben's Brigade Fundraising

This year we will be making our own customized shirts for Ben's Brigade. Deadline to order is going to be September 15th. This logo will be on a white shirt. $12 for adults and $10 for children.  Let me know if you are interested in getting your very own Ben's Brigade t-shirt or click here to go to our fundraising website where you can  order your shirt on-line.

All proceeds from the sale of these shirts will go to the LuMind Foundation for Down Syndrome Research.  What will you do today to make life a little bit nicer place for those with Down syndrome?  Consider donating today!

Wednesday, August 26, 2015

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

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.