Invest in People with Down Syndrome – Meet New Board Member Debbie Morris

As a senior vice president with Lexington Insurance Company (part of powerhouse firm AIG), Debbie Morris knows a good venture can pay dividends. As one of our newest board members, Debbie sees cognition research, long overlooked and well underfunded by the government, as one of the most worthwhile investments for people with Down syndrome, one with the power to positively ripple beyond the Ds community.

“People with Down syndrome go to school, have jobs, and bring joy to those around them. People naturally gravitate toward them; my husband and I call their 21^st chromosome ‘the love chromosome,’” said Debbie. “Investing in the future of the Down syndrome population helps everyone – not just the Down syndrome community.”

While Debbie calculates sound reasons for investing in this community, she credits her daughter ten-year-old Sophia, who has Down syndrome, as being her own wonderful dividend.

“Rock star” Sophia is Debbie’s inspiration for everything she does in the Down syndrome community.

“She’s a rock star. She has such personality; she’s the love of my life,” laughed Debbie. “There’s so much to learn from people with Down syndrome. Sophia teaches me how to slow down and appreciate the moment.  I assure you this is no easy task!”

The ability to stop and slow down allows Debbie a moment to focus on the long-term. “I’m not a scientist and don’t feel the need to understand all the details of the research. I love the idea that a drug therapy may help Sophia and her friends get better jobs or live outside the home more successfully,” she explained.  “And let’s not forget how important the research is to other projects and initiatives, like a greater understanding of Alzheimer’s. LuMind has made incredible progress in such a short time. I’m thrilled to be part of this amazing organization.”

Debbie puts her commitment to work for Sophia and others with Down syndrome. In addition to joining LuMind Foundation’s Board, she serves as President and Co-Founder of Gigi’s Playhouse in New York City. She’s also been a long-time member of the committee for LuMind’s ROMP FOR RESEARCH, which held its annual fun fundraiser this October.

Over the past ten years of advocacy and action, Debbie has noted how the Down syndrome community and people around them have evolved.

“I love the thought that things are changing for this community. Things keep getting better. Now is the time to invest in the lives of people with Down syndrome,” she counsels everyone, not just people blessed with a family member with Down syndrome.

Tribute 21 – The 2nd Annual Masquerade Ball Benefiting RDS and the Tribute 21 Fund

Thanks again to Erin and Brendan Fry, and the entire Host Committee for Tribute 21, for the Second Annual Masquerade Ball Benefiting Research Down Syndrome and the Tribute 21 Fund, held on November 7 in Washington, DC.

Some pictures from Tribute 21 2014 are shared below, and here is a link to all the pictures, thanks to Bridget Conley, Jennifer Lust and Caitlin Taylor!

The evening's success is due in large part to our sponsors, who were so instrumental in making the evening such a resounding success….Thank You!

What an amazing night. Let's do it again.  We look forward to seeing you in 2015!

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Thinking About Science the Right Way – Hampus Hillerstrom Joins LuMind Board

Please join us in welcoming new Board Member, Hampus Hillerstrom who will also be taking the lead on our Development Committee.

Hampus was introduced to the Ds community after his son Oskar was born a year ago.

“Oskar’s birth left me curious about what was going on in the biotech industry in the field of Down syndrome,” explained Hampus, who has a background in biotech and health research. “Dr. Brian Skotko from Massachusetts General Hospital directed me to the LuMind Foundation, and I was immediately impressed by the team and the progress they achieved in little time and with very limited funds.”

Once he understood the current research efforts in Down syndrome, not just cognition research, Hampus asked the next big question. “What is the best way to make a change in Down syndrome research? I was aware the NIH had funding limits and that LuMind made grants once per year. There’s a big need for more,” he said.

Hampus with his wife Lianor and son Oskar.

Hampus not only brings a science background to LuMind Foundation, he also is a businessman. In 2006, he co‐founded NeuroPhage Pharmaceuticals, a company developing a novel approach for treating Alzheimer’s, Parkinson’s and other protein misfolding diseases. He currently serves as its Executive Vice President and Chief Financial Officer.

“As I was asking why there isn’t more Down syndrome research and therapeutics,” explained Hampus. “I wondered if it was simply a question of identifying the unmet medical need.” For cognition research, Hampus quickly identified the need was funding and saw promising lines of discovery were left unexplored due to lack of grants.

Hampus is also intrigued by the connections between Ds and Alzheimer’s disease. “The Alzheimer’s disease community has a neuroimaging project, ADNI [Alzheimer’s Disease Neuroimaging Initiative]. There are so many similarities between Alzheimer’s and Down syndrome,” said Hampus. “We have a good start with the DS Consortium, but we can build a case for the need to add neuroimaging to advance research and assess candidates to test therapeutics.”

Hampus may have been motivated by Oskar and applied his business acumen to the science of Down syndrome, but he understands the long-range view of the possibilities.

“Oskar is a year old and wonderful,” said the proud father. “There are debates about research changing my son or daughter and I am so happy with where he is, but I like the plus 15 concept. I see stories of children with Down syndrome graduating high school and university, having jobs and living independently and need very little support. With cognition-targeted therapeutics and a lot of breakthrough scientific discoveries in Down syndrome, there are an increased number of amazing things to achieve, and some may help my son, while some may help the next generation.”

Businesspeople focus on the bottom line. Hampus joined the Board of the LuMind Foundation because our scientific approach appealed to his business sense.

“The approach LuMind Foundation took with the Scientific Advisory Board and focusing on strategically progressing research with targeted grants while supporting infrastructure and collaborative projects, highlights the best qualities about our Foundation and the success we’ve achieved. They think about the science the right way,” he said.

DS-Connect® Challenge Impact: A Look at the Map

At LuMind Foundation, we bring light to the science of Down syndrome cognition research. Thanks to to the amazing support for LuMind Foundation’s DS-Connect® Challenge, hundreds of you brought a glow to the DS-Connect® map!

The DS-Connect® Map on November 12, 2014 (courtesy NIH).

On the map of the major metropolitan areas where aggregate, de-identified information is displayed, six areas now glow bright red. A big shout-out to our friends in Texas who shifted from yellow to red, indicating more than 100 people support research.

Don’t see your area glowing red or yellow? That’s because the registry protects your privacy and is only displaying the major metropolitan areas. Your information is still there!

“We are thrilled with the response to the LuMind Challenge and the positive impact that it has had on increasing the number of registrants on DS-Connect®. We are grateful for all the families who have signed up for the registry and hope that they will continue to support research in Down syndrome. This resource will help connect families with the research that matters to them,” said Dr. Melissa A. Parisi, Chief of the Intellectual and Developmental Disabilities Branch at the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), National Institutes of Health (NIH).

Thank you to the NIH and all the people who joined DS-Connect® in October, or earlier or just helped to spread the word!

Update on Transition Clinical Trial: ELND005

Transition Therapeutics Inc. (Elan) announced the results of a clinical study of drug candidate ELND005 in young adults with Down syndrome. The study focuses on neuropsychiatric symptoms associated with Alzheimer’s disease and cognition in people with Ds.

In our September 2013 Newsflash, LuMind Foundation’s Chief Scientific Officer Dr. Harpold explained the ELND005 study. Essentially, ELND005 is a molecule that may hold the potential to improve cognition in Ds, in part, by reducing aggregation of beta-amyloid, which is a product of the amyloid precursor protein (APP) encoded by a gene on chromosome 21 — thus preventing the intraneuronal buildup of beta-amyloid plaques that most people with Ds develop by their 40s associated with Alzheimer’s disease.

LuMind-supported research has previously shown reducing the levels of APP and/or certain of the APP-derived beta-amyloid products overcome specific cognitive and neurodegenerative Alzheimer’s disease-related effects in mouse models of Down syndrome.

LuMind has also been working with Transition Therapeutics to supported clinical trial participant recruitment. Your donations and support helped advance this clinical trial!

Calling All Siblings

Most people with Down syndrome have more in common than an extra chromosome: they have loving, supportive families. We’ve seen how families come together to support Down syndrome research. Now siblings can get involved too.

It’s easy: Create a fundraising page and challenge your friends and family to give on December 2. Tell the world about your amazing, inspirational sibling and tap into your social media networks to spread the word. Telling your story on a your own page is the best way to get your network to invest in cognition research.

The biggest sibling fundraiser will have their story featured on our website, plus15 blog, and on our social media sites after Giving Tuesday. Ready to go now? Set up your page today and tell us your inspiration. We’ll give your page a kickstart by talking about you now.

Think you can raise more money than your brothers or sisters? How about your cousins or friends on your sports teams? We bet you can… just don’t let your sister win.

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.

NIH Releases 2014 Research Plan

We’re very pleased to announce that NIH has just released the updated document “Down Syndrome Directions,” the NIH Research Plan on Down Syndrome. The research plan will provide another great way to work with the DS community to further research efforts.

“In succeeding the previous NIH Plan for Down Syndrome released in late 2007, ‘Down Syndrome Directions’ represents a very important plan for Down syndrome research,” said Dr. Michael Harpold, LuMind’s Chief Scientific Officer and also chair of the DS-Connect® Governance Board. “The plan builds on the very dramatic research progress and incorporates significant new directions to address the health of children and adults with Down syndrome.”

‘Down Syndrome Directions’ was developed with input from the entire Ds community and the many comments and ideas were compiled by the NIH staff.

Added Dr. Harpold, “We especially thank NIH for their sincere consideration and incorporation of the many feedback comments from those in the Down syndrome community, including individuals, organizations and the researchers and clinicians. We look forward to continuing to work together with the NIH, and all of the community, in implementing this plan and furthering significant progress in creating new opportunities for all children and adults with Down syndrome.”

To read or download a PDF of “Down Syndrome Directions,” visit NIH’s publication page.

For more information on the DS-Consortium, please visit their webpage.

Honoring Sarah Wernikoff

Sarah Wernikoff with Dr. Michael Harpold, LuMind Foundation’s Chief Scientific Officer.

The LuMind Foundation fondly bids farewell to our Board Chair, Sarah Wernikoff. Sarah led the LuMind Foundation Board of Directors for two years, after being involved with the board for several years. We are very grateful for Sarah’s time and talent spent shaping the organization as we celebrate the incredible research discoveries we’ve funded and progress toward FDA approved drug therapies.

“Sarah has done a fabulous job of leading the organization,” said LuMind Foundation co-founder Patty White. “Sarah has been a strong contributor to the organization for all seven years of her board service.  This last year as Board Chair she smoothly led the organization through a leadership change and brand update while grant awards to promising research projects continued with impressive results. The organization is stronger for her leadership.”

During her tenure as Board Chair, Sarah made many tremendous contributions that will have long-term, very positive impacts on the organization as we grow. She drove the rebranding effort as we migrated from DSRTF to LuMind Foundation, led the search committee for our Executive Director, Carolyn Cronin, and strengthened relationships with local affiliate groups. She also arranged fund raising events and research presentations to cultivate new donors and help grow the organization.

Sarah greeting families at the November 2014 research presentation and tour at Stanford University.

When Carolyn accepted LuMind’s Executive Director position two years ago, Sarah quickly became Carolyn’s go-to person.

“Sarah was the right person at the right time to advance the mission of LuMind Foundation,” explained Carolyn. “Her never ending energy for either early or late night phone calls to discuss the future of the organization was so helpful to me. She’s been the driving force behind keeping the momentum going all these years.”

Thanks to Sarah’s hard work, multiple 40-hour plus weeks as a volunteer, and incredible talent and ideas, the LuMind Foundation is poised for great growth, continued research breakthroughs, and recognition as the leading source for private funding of Down syndrome research.

We will miss you Sarah, but you left an amazing legacy. Thank you SO MUCH for your unwavering support and vision!