Awaken A Force

By Alan Gard, Devoted Dad (and Jedi Knight Battling Darth Dementia)

Aspiring Jedi Alijah and others with Ds need your help to defeat Darth Dementia!

As December greets us this year, many are in a festive move as a special event approaches…namely the release of Star Wars: The Force Awakens. Over $50 million in presale tickets have already been sold. When was the last time you bought a ticket in advance to go see a movie? I didn’t think so. In other words, this movie is going to be HUGE. There is extreme interest in checking in on Han, Luke, and Leia as well as meeting new characters Rey, Finn, and Kylo Ren.

The Force Awakens will be the seventh entry in the Star Wars saga. In a broad sense, the saga is a simple story of Good vs. Evil, or maybe more accurately it is a story of our individual choices to be Good or Evil and how those choices can change over the course of time and circumstance.

If one concentrates on the original trilogy, Episodes IV – VI, the story is Luke Skywalker’s Hero Journey.  It starts with the Call to Adventure from humble beginnings. In Luke’s case, he is reticent at first. He is too busy with the harvest to get involved. That sounds familiar to most of us in the frenzy of our day-to-day lives! He eventually heeds the call and over the course of this story arc redeems his father and brings down the leadership of the Galactic Empire.

Of course, now the story won’t end there and much of the interest in The Force Awakens is in what becomes of Luke after the story left off 32 years ago. With one Hero’s Journey complete, we now will learn what happens when there is another chapter:

• Does Luke stay a hero?
• Does he turn to the Dark Side?
• Does he become a character more gray than at the black or white end of the Dark vs. Light spectrum?

As one who grew up with the original trilogy, Luke is the character in which I have the most interest as the new saga begins.

The story could also be an ongoing story of The Force, a metaphysical energy that binds everything in the universe together and gives those who are genetically and spiritually gifted to tap into it magical powers. It has its basis in the concept of Prana, meaning “life force” from Hindu culture. This view makes the story one about how we are collectively part of something bigger and all must play our role in that story.

If viewed over the entirety of the six episodes released to date, it is the Story of Anakin. He starts as a slave, learns he is strong with The Force, is trained, becomes a Jedi, turns to the Dark Side becoming a Sith Lord named Darth Vader, gets severely injured in a duel with his original mentor Obi-Wan, gets saved by the Emperor and technology, serves as the Emperor’s sergeant-at-arms in oppressing the galaxy, vanquishes Obi-Wan, fails to crush the Rebel Alliance, discovers he has a son, cuts son’s hand off in a duel, takes his son to the Emperor to be turned to the Dark Side, turns on the Emperor and kills him, and then dies having returned back to Good. And that’s the simple version!

In my view, Episodes I – VI are really a rise and fall story of the Sith, an order that derives power from the Dark Side of the Force. This order sought to elevate the strong and eliminate the weak. But throughout the Star Wars story, the Sith are foiled by those they might consider weak working together to overcome them.

Unfortunately, the Sith are not confined to a galaxy far, far away. We have a Sith Lord among us here, and his name is Darth Dementia. He is a particularly ruthless enemy. He steals the souls of his victims and inflicts pain on suffering on all those around them.

I have witnessed Darth Dementia firsthand. Growing up, visits with my Great Aunt Catherine showed me what Alzheimer’s related dementia could do to one’s ability to know their family. Imagine how sad an existence it would be to not be able to connect with your loved ones from both sides of that diagnosis. As a young adult, I saw two of my uncles suffer from Parkinson’s disease and the dementia that can eventually accompany that disease.

Now I am a parent to a child with Down syndrome. While my wife and my current energies are spent trying to help Alijah develop and reach his potential, Darth Dementia is an ever-present, dark-cloaked figure in the corners of our minds. As one who works with numbers, I know just how stacked the odds are against Alijah in his fight to hold off Darth Dementia. To think that all the gains Alijah is making could be taken away so early in his life is a heartbreaking concept. But, as of today, that is a very likely scenario.

Luckily, there are already a few Jedi taking on this powerful Sith Lord. But as the movies have shown, the only real victory comes when the multitude work together. So if you are an aspiring Jedi, you have an opportunity to be a hero in this story. Or if you see yourself as more of a Wookie or an Ewok, you can be a hero in this story too. Imagine if everyone who has already pre-ordered their The Force Awakens ticket got so inspired by the movie and the fight against Darth Dementia that they came home and made a donation in the amount of their movie ticket. $50 million would serve notice to Darth Dementia that that his power was at risk.

If all those that see the movie would do the same thing, it would change the conversation from IF we can do it to WHEN. And asking when is a MUCH better question than asking if – not just for those with Down syndrome, but for each and every one of us that want to keep ourselves and our families safe from Darth Dementia’s soul-stealing clutches. While Darth Dementia may play favorites toward victims with an extra chromosome, they are not his only prey.

Think back to where the Star Wars phenomenon began. It began with A New Hope. Any donation now—big or small, the price of a movie ticket, whatever—will in fact make A New Hope come true in the lives of those most at risk and their loved ones. Don’t let the supposed constraints of the “harvest” in your life deny you your own Hero’s Journey. And while we—at least us non-insiders—don’t know where the story goes after The Force Awakens, I am positive there is a place in this story for us all to help Awaken A Force to defeat Darth Dementia once and for all. I definitely want that to be a part of my story. I hope you do too.

Thank you for your consideration. And may The Force be with you!

#WowWednesday

Thank you for making our first real #GivingTuesday a grand success!

We’re not sure how widespread #WowWednesday is as a hashtag trend, but it reflects how we feel after the response on #GivingTuesday.

THANK YOU!

This was our first push on Giving Tuesday and we weren’t sure what to expect. December 2 fell during our Annual Appeal, so we asked for your help in sharing our message, then supplied graphics across our social media sites for you to share, retweet, comment and like. Others created their own posts and shared pictures and #UnSelfies of the people who inspire them.

You kept us busy all day monitoring our social platforms, answering phone calls, and trying to thank and acknowledge everyone who shared or retweeted one of our messages or a message about us. Some people we weren’t able to thank, mainly due to privacy restrictions and platform fickleness – and of course human error may have played a role, too. Please know that we appreciated your help.

So many people responded, some even across multiple platforms and numerous times throughout the day. We received responses to our volunteer opportunities and thank everyone for offering their time and talent.

We had a modest financial goal and we are honored to say you exceeded our expectations. Thank you to everyone who donated. 

We also had awareness goals related to letting new people know how close we are to making cognition therapeutics for people with Down syndrome a reality. Of all the donations we received on Giving Tuesday, a third were from people making their first gift to LuMind. Many gifts were also $1000 or more and will be matched.

We are still in our Annual Appeal, so hopefully you will continue to spread the word about our message and support cognition research, especially as we are so close! Our 1:1 match for gifts $1000 or more is still on, so tell people a investment in cognition research you give with your head as well as your heart.

#Wow. And #ThankYou #Grateful and #WeLuvOurSupporters. 

Making an Online Impact for Down Syndrome

by Shon Christy, LuMind Foundation Board Member

LuMInd Foundation Board Member Shon Christy with his inspiration – his son Beckett.

It has been said that social media is fire and passion is the gasoline.  The LuMind Foundation experienced that first hand on March 21, 2014!

The Online Success of WDSD

On World Down Syndrome Day 2014, the LuMind Foundation had one their best online giving days driven by the incredible power of social media. In early 2014, a generous donor approached the foundation and said that they would match 3 to 1 (see what they did there 3/21) any donations received on World Down Syndrome Day. March 21, was also the day LuMind Foundation was launching our new name from the Down Syndrome Research and Treatment Foundation.

The marketing committee put together a targeted social media plan to announce the new name and attract potential donors who might give knowing their gift would get extra mileage with the match.

The approach was spot on!  Of the more than $105,000 raised on WDSD, online giving exceeded $90,000. Best of all was that the strategic social media plan allowed us to generate traffic from people not currently connected to LuMind on Facebook. The Facebook post was seen by over 185,000 people and about 3,000 people engaged with the post including sharing it more than 200 times with their networks. Nearly 1,000 people visited the newly launched LuMind website in just 24 hours. Being in the right place, at the right time, with the right people and message resulted in community coming together to make a big impact in Down syndrome cognition research.  Thanks so much for your caring and generosity!

Let’s Do It Again

As we near the end of the year there is a last call for 2014 that comes in the form of LuMind’s Annual Appeal and the increasing popular #GivingTuesday. A generous donor has stepped up once again to finish this incredible year strong by offering to match 1:1 any donation over $1,000! 

For those of you unfamiliar with #GivingTuesday, it is December 2nd and it is completely focused on giving back. The rationale is that we have a day for everything else such as Black Friday and Cyber Monday where we spend money like crazy. Why not have a day completely focused on giving back?

If you are able to help support these fundraising activities, we invite you to participate in any way that you feel comfortable – making a donation, volunteering, sharing posts or starting a personal fundraising page and invite friends to give!  How cool is it to join an online community to make maximum impact as a Down syndrome family much like we did on World Down Syndrome Day.  Each and everyone of us has the opportunity to drive the future with our time, talent, and treasure.

My Giving Story

Since my son Beckett was born I’ve had a passion for working to positively impact the lives of individuals with Ds. Beckett is now four years old and I want to share the blessing of Ds with the world and help others! I’ve tapped into to my social and professional networks to raise money for LuMind, Buddy Walks and other causes close to my heart. I feel honored when people ask me to support their causes, too because it is a sign that they value my friendship enough to share what is important to them. (I must admit sometimes I do need a reminder before I give, so I appreciate more than one email or message.) To me, giving is an opportunity, not an obligation.

While #Giving Tuesday is focused on one day, our Annual Appeal has a longer timeline, allowing you more time to share the story about the importance of Down syndrome cognition research and hopefully raise funds to support that research. Please help spread the word about LuMind Foundation and the importance of Down syndrome cognition research any way you can.

Thanks again for all you have done and will do in the future!

Questions? Connect with Shon via email shon@fclpnt.com and on his social media sites.

   

#GivingTuesday – We Need Your Help!

Giving Tuesday is December 2 – a national day of giving that follows Black Friday and Cyber Monday. You already know that Down syndrome cognition research relies on private funding and we need your help to funnel Giving Tuesday philanthropy toward fueling more discovery breakthroughs. Here’s how you can help:

• Make a donation –  Giving Tuesday runs during our Annual Appeal and we have a match running to make your donation do more to support cognition research. All gifts of $1000 or more will be doubled, thanks to a generous supporter. All gifts are appreciated!
• Spread the word – Giving Tuesday is rooted in social media and fueled by online sharing. Watch our website and share our posts with your network to drive donations to LuMind Foundation. Or tell your story and invite people to participate in Giving Tuesday by supporting you and your loved one with Down syndrome. Use #GivingTuesday #GTLuMind and we will retweet and share.
• It’s not all about money – On Giving Tuesday, people are encouraged to share talent, time, ideas. All day on Tuesday we will be posting opportunities to volunteer with LuMind. Give them a look and consider asking your network to lend some talent to LuMind.

      

So, what should you tell people? Along with relating your personal story about why Down syndrome cognition is important to you, there’s an added incentive to share with your network: All donations over $1000 will be matched 1:1 by a generous supporter.

And we’d love to help! Tell us why you are inspired by the promise of Down syndrome cognitive research and we’ll feature you on our social sites.

Down syndrome cognition research is a promising investment, not only for our loved ones with DS, but also for the Alzheimer’s community. We thank you for supporting LuMind Foundation and giving with your head as well as your heart.

LuMind: The Next Generation

Tara Doyle may not (or may) be a Star Trek fan, but she is embracing the responsibilities of her generation, the next generation of Down syndrome research supporters.

Tara is the daughter of LuMind Foundation Board Member Margie Doyle and sister to the delightful Colin, who has Down syndrome. Before the Funding Futures Chicago fundraising event on October 18, Tara, her brothers, cousins, and friends invited their networks to a “Happy Hour” gathered at Goose Island. During the Happy Hour, mom Margie inspired the crowd of more than 50 people who learned about the importance of funding Down syndrome cognition research.

“I was hoping to get a few more young people interested in our cause and the exciting research going on. After my mom spoke, I could tell right away how inspired everyone was,” explained Tara, who organized the event along with brother Packy Doyle and cousin Kerry Roach. “I had multiple people approach me and say they had no idea all of this research existed, and how thrilled they were to get on board with such a great cause.”

Tara, her brothers, cousins, and friends will be a vital part of LuMind Foundation’s Giving Tuesday (December 2) campaign. Tara is inviting other siblings of people with Down syndrome to get in touch with her to help spread the word about LuMind Foundation in support of Giving Tuesday (Tkdoyle7@gmail.com). “I’m extremely fired up to hear from anyone who’s interested in helping!” she said.

“Many young people are at the point in their lives where they are looking for something meaningful to give back to. I think Down syndrome research is the perfect cause to invest in. We’re ready to make a difference,” added Tara.

To get all the #GivingTuesday updates, Tara reminded us to ask you to follow us on social media:

               

With the life expectancy increasing for people with Down syndrome it is wonderful to see the vibrant and enthusiastic support of siblings and cousins. Thank you Tara, Packy, Kerry and all the other siblings and friends who want to help!