Harnessing the Momentum of Down Syndrome Cognition Research

by Ryan Hartman, Chairman,  LuMind Research Down Syndrome Foundation Board of Directors

Did you know if we had the funding, we could award $20 million in Down syndrome cognition research grants tomorrow?

One of the most interesting things I’ve learned since joining LuMind Foundation is the wealth of possibilities on the horizon. I’m a businessman with a background in aerospace, and I therefore appreciate the power of momentum and the efficient use of energy to keep making progress. Thanks to my son Taylor who has Down syndrome, I also have a personal interest in wanting to propel Ds research forward at mach speeds.

Ten years ago, there was little research progress on Ds. Researchers interested in unlocking the puzzle of Down syndrome were essentially forced to go into other areas because it was near impossible to secure funding for Ds discovery. Without funding, those researchers lent their talents to other efforts.

Now thanks to the efforts of the LuMind Foundation founders, donors, and the Ds community, there’s been a shift. Your support has been the catalyst and new researchers are entering the field and making exciting discoveries. We see proof each year at LuMind Foundation when our Scientific Advisory Board receives increasingly more proposals than we can fund with so many promising lines of discovery.

The momentum is exciting, but without additional funding we’re leaving research on the table. 

The LuMind Foundation has been successful in their approach to evaluating and selecting research grants and we have established awesome momentum. Thanks to you, four clinical trials are running based on discoveries ignited in one of our funded labs. We are proud of our results and the momentum we have generated, but we see so much more on the horizon. As within aerospace, momentum should be harnessed and coupled with propelling energy to gain more momentum to make further progress.

LuMind RDS Foundation plans to increase our propelling energy by amping up our funding while remaining true to our proven approach. What additional Ds research could we fund if we had the money? There are 20 million possibilities.

Leaving research on the table means there are discoveries, clinical trials, and drug therapeutics to improve cognition unfunded and undiscovered. Without a funding catalyst, the next great breakthrough could be delayed or remain undiscovered. Without a funding to propel us forward, we lose the momentum we have created.

I invest in cognition research for my son, but also because I see the possibilities. The ideas are there, the talent is there, we just need to keep fueling the momentum.

Please consider joining me in a year-end donation to LuMind RDS Foundation and cognition research.

Take Stock in Year-End Giving: More Than a Tax Deduction

(Photo credit: https://www.flickr.com/photos/herval/51039207/in/photostream/)

When the stock market does well, it offers an opportunity for people to do good.

Thank you to the many people who have contacted us about making generous year-end donations of stock. We are especially touched by the number of grandparents who are supporting their grandchildren with a donation to fund cognition research.

It’s easy to complete a stock transfer, just provide our information (below) to your financial management firm:

• Receiving firm name: Merrill Lynch
• Receiving Firm DTC Number: 5198
• Receiving Account Title: Down Syndrome Research and Treatment Foundation
• Receiving Account Number: 8L7-01B97

While our new name is LuMind Foundation, our account is still set up as the Down Syndrome Research and Treatment Foundation. Your tax-deductible gift will still get to us.

We appreciate everyone who is bullish on cognition research!

Gift Honors Dr. Michael Harpold

Dr. Michael Harpold (right) speaking with Sonya Cabral at the IMDSA Research Conference.

Everyone who meets Dr. Michael Harpold, LuMind Foundation’s Chief Scientific Officer, immediately understands his dedication to Down syndrome cognition research and the Ds community.

One family of supporters, Suzanne and Carl Shepherd, are recognizing that dedication with a $15,000 gift to the foundation in honor of Dr. Harpold. The gift will support specific endeavors to ignite research and invite collaboration, two areas of importance for Dr. Harpold, who also heads up the LuMind Foundation’s Scientific Advisory Board. Specifically, the Shepherds are supporting new research fellowship grants for young and new investigators, and conferences, workshops, and surveys to promote collaboration and the exchange of ideas on research that may propel Ds discoveries.

“Drawing more researchers into the field, and ensuring the effective communication of research results and strategies, are key to the ultimate goal of the Ds community – new therapies to improve cognition and other effects of Ds,” explained Suzanne Shepherd in a note to the Foundation. “This donation is in honor of Michael Harpold and his many contributions to accelerating Ds research.”

LuMInd is very fortunate to have Michael working directly with the Scientific Advisory Board to  advance DS cognition research. Thank you to the Shepherd Family and to Dr. Harpold!

A Research Story: Fragile X

On National Public Radio, there was a story about a foundation started by concerned parents, funding impressive discoveries, results of clinical trials, and the quest for new avenues of research. Nope, not the LuMind Foundation (or even our former name Down Syndrome Research and Treatment Foundation). This is a story about fragile X.

The NPR piece, ‘A Family’s Long Search For Fragile X Drug Finds Frustration, Hope’ highlights the family of a 25-year old man with fragile X. In 1994, his parents helped start the FRAXA Foundation to ignite research into fragile X. Recently, their son participated in a clinical trial that came about in part thanks to a researcher FRAXA had funded.

There are so many similarities between the journey of these parents of a young man with fragile X and our own quest to find drug therapeutics to improve cognition for people with Down syndrome. Change a few words, a few names, and this could be the Down syndrome community or the CF world, or MS or ALS.

This article illustrates the realities of research, the hopes and frustrations and lessons learned from each step in the research and clinical trial process. The positive force achieved from collaboration between the community, researchers, and biopharma companies also mimics our journey and approach.

Perhaps most importantly, this story underscores the importance of funding research because even when there aren’t immediate positive results, what is learned may open the doors to other discoveries.

Thank you for your support of cognition research.

 

RemarkABLE!

The ABLE Act passes!

We are so happy to join in the celebration of the passing of the ABLE Act. After passing house and the senate, President Obama signed the ABLE Act into law on Friday.

Thank you to all the people who worked tirelessly to pass the Achieving a Better Life Experience (ABLE) Act, including the politicians who sponsored and voted to pass the bill, members of our community who signed petitions and wrote letters to congress, and all the staff and stakeholders in all the communities for people who advocated for the bill.

A special recognition to Steve Beck, Jr., vice chair of the board of the NDSS, who passed away just before the bill was passed. Steve worked so hard to make the Act a reality.

A big shout-out to Sara Wolff who became one of the faces of the Act representing the Down syndrome community. Here’s Sara giving a speech back in May on the importance of the Able Act.

 

DSAGSL Offers a Challenge

We are so excited to report a $10,000 donation from the Down Syndrome Association of Greater St. Louis (DSAGSL). The DSAGSL made the pledge during our Annual Appeal/Giving Tuesday – doubling their impact for cognition research!

Thank you DSAGSL!

According to DSASL Executive Director Jeremie Ballinger, “DSAGSL’s families have long been interested in research – especially in cognition research that allows people with Down syndrome to extend and sustain a high quality of life. For the first time, we are backing up this sentiment with a financial commitment, and member input was overwhelming that we direct our initial gift toward LuMind. We applaud LuMind’s research results, and we are especially impressed that LuMind devotes such a high percentage of its funding directly to research.”

The DSAGSL also has something for other Down syndrome affiliate organizations – a challenge!

“We challenge all other Down syndrome organizations – regardless of size – to support research, and we encourage them to include LuMind in their giving.  It’s well worth the investment for this and future generations of people with Down syndrome,” said Ballinger.

Giving during our Annual Appeal still takes advantage of our 1:1 match for gifts $1000 or more. Please consider LuMind Foundation in your giving plans.

Thank you to DSAGSL – and all the Ds affiliate organizations that support research!

LuMind in the News: Foundation strives to enhance lives of people living with Down syndrome and Alzheimer’s

Thank you Mary Pritchard, a reporter with the Community Advocate. Mary heard about our Race for Research Road Rally from last June and was interested to learn more about our organization. Thank you Mary for taking such time and care in writing the article.

Read the full article.

Stretch Those Donation Dollars

We are often asked about programs that let our supporters do more with their donation. Here are some ways to have a greater impact on Down syndrome cognition research.

Holiday and milestone gifts – Many supporters ask their friends and family to donate to us instead of receiving a holiday gift. We have a variety of e-cards to send so you can honor a loved one or be remembered yourself with a gift to LuMind RDS Foundation.

Recurring gifts – Planned giving allows you to make a commitment to our organization on your schedule. Just check recurring donation on our donation page to set up a recurring gift.

Corporate matching – Many companies will match charitable contributions made by their employees. Corporate matching is a wonderful way to increase your gift to LuMind RDS Foundation allowing us to fund even more research.

Giving programs – Remember us during planning giving opportunities with the Combined Federal Campaign (12089) and United Way. For the CFC, we are still listed as Down Syndrome Research and Treatment Foundation.

Stock transfer – We are able to accept stock dividends as a donation. Just get in touch with us for the information.

Shopping programs – Many organizations, like Amazon Smile, have ways to send a portion of your shopping to a charity. We are registered with several sites, sometimes still as RDS or DSRTF. Check it out before you shop!

Corporate partnerships – We enjoy support from a number of corporations to sponsor events or programs. Check out our events page or get in touch with us for ideas!

Planned giving – We are able to work with you to set up legacy gifts, life insurance, and securities to benefit cognition research. Just ask.

Events – Consider hosting an event that benefits the LuMind RDS. We have lots of ideas and toolkits for all types of events. Pool your giving resources by encouraging your friends and family to donate – and have a fun time!

Let us know what you need to stretch your donations dollars. We can register with new sites and companies or provide nonprofit information so you can make your donation go further. Get in touch at LuMind@LuMindFoundation.org.

Research Update at Stanford

(left to right) LuMind Foundation co-founder Jim White, Stanford University’s Dr. Ahmad Salehi , LuMind Executive Director Carolyn Cronin, and Stanford University’s Dr. Craig Heller.

The LuMind Foundation returned to its Bay Area roots on November 2, 2014 with a well-attended research presentation at Stanford University.  More than sixty people filled the room to listen to Drs. Craig Heller and  Ahmad Salehi discuss new developments and achievements in their research. Jim White, one of the founders of what was then known as the Down Syndrome Research and Treatment Foundation, was also on hand to greet participants and talk about their commitment to Down syndrome cognition research.

Jim White, one of LuMind Foundation’s co-founders, addresses the crowd at the event.

Nutrition and sleep were among the topics discussed. Sleep apnea remains a challenge for many individuals with Down syndrome and is tied to a number of health issues, including diabetes, high blood pressure, stroke, and heart problems.

Dr. Salehi also talked about an asthma drug, formoterol, which in large doses has been shown to improve learning and memory in a mouse genetically engineered to mimic Down syndrome in humans by carrying extra copies of genes. At lower doses, this drug is already FDA approved to treat asthma and chronic obstructive pulmonary disease (COPD).

Speakers Dr. Heller (pictured) and Dr. Salehi are both LuMind Foundation-funded researchers.

Because over 70% of individuals with Down syndrome suffer from sleep apnea, it is reasonable to think that respiratory issues are common in this population and therefore treatments that target both cognition and respiratory problems, like formoterol, are especially interesting to researchers.

At the conclusion of the presentation, Dr. Heller led a tour of his lab, which was especially popular with the children in attendance.

The LuMind Foundation remains committed to supporting this and other research to find treatments that will improve memory, speech, and learning in people with Down syndrome.  We would like to thank Drs. Heller and Salehi and Jim White for sharing their insights with us. We also appreciate Sara Wernikoff’s hard work organizing the event. And of course, thank you to everyone who attended the presentation.

One eXtra Reason to Live.., Love… Hope

Thank you to the amazing folks who came out for a night fun in Southern California on November 1. LuMind Foundation was founded in California and since then we’ve expanded our footprint to reflect that people with Down syndrome around the world can benefit from cognition research. We were happy to get back to our roots with the annual Southern California benefit gala: “One eXtra Reason to Live … Love … Hope.”

Attendees viewed exotic cars in a casino atmosphere and learned more about Down syndrome cognition research. They also had chances to bid on amazing silent auction items including restaurant and vacation packages, a car-themed experience from Tesla, and many gifts from local businesses. We are so thrilled to see support is still strong in California after ten years! Thank you!

Enjoy pictures from the event below!