World’s First Clinical Trial for anti-Abeta Vaccine Targeting Alzheimer’s Disease-like Characteristics in People with Down Syndrome

PRESS RELEASE – Issued by AC Immune

• Studies AC Immune’s ACI-24, the first anti-amyloid vaccine for treatment of Alzheimer’s disease-like characteristics in people with Down syndrome
• Clinical Study is done in collaboration with University of California San Diego
• US NIH provides significant funding with an additional grant from the LuMind Research Down Syndrome Foundation
• Alzheimer’s disease-like characteristics develop in virtually all people with Down syndrome over age 40; majority develops associated dementia over
  age 60

Lausanne, Switzerland, San Diego, CA and Marlborough, MA USA – January 7, 2016 – Today plans were announced to conduct the world’s first clinical trial for a vaccine targeting Alzheimer’s disease-like characteristics in those with Down syndrome. The study will test AC Immune’s vaccine ACI-24 and is being conducted in collaboration with the University of California, San Diego (UC San Diego) Down Syndrome Research and Treatment Center. Funding is provided by a significant grant from the US National Institutes of Health (NIH) and an additional grant from the LuMind Research Down Syndrome Foundation. This is the first public/private collaboration for a clinical trial in the field of Down syndrome.

Individuals with Down syndrome (DS) have an extra copy of chromosome 21 which carries the gene for APP encoding the precursor protein of Abeta, one of the hallmarks of Alzheimer’s disease (AD). An important consequence is that individuals with DS develop AD-like characteristics at a rate three to five times greater than that of the general population and at a much younger age. Further, AD-like characteristics develop in more than 98% of people with DS over age 40 with up to 80% developing associated dementia over the age of 60. It is estimated that there are 6 million people with DS worldwide, with 400,000 in the United States.

Trial participants will be adults with DS. The objectives of the trial include studying safety and tolerability of ACI-24, its effect on induction of antibodies against Abeta, clinical and cognitive measures in adults with DS and its effect on biomarkers of AD-like pathology in DS. Participants in the study will be treated for 12 months, with 12 months follow up.

Prof. Andrea Pfeifer, CEO of AC Immune said: “We are very pleased to bring this potentially disease modifying treatment for Alzheimer’s disease into the vulnerable, genetically predisposed Down syndrome population. The combined knowledge and resources of AC Immune, UC San Diego, NIH and the LuMind Research Down Syndrome Foundation should generate much needed insight for treating the Alzheimer’s-like characteristics of those with Down syndrome. Additionally, this ground-breaking clinical trial could enhance our understanding of early intervention and prevention of Alzheimer’s in general.”

Dr. William Mobley, Executive Director of the UC San Diego Down Syndrome Research and Treatment Center, commented: “We are delighted to join our colleagues at AC Immune and the LuMind Research Down Syndrome Foundation in this exciting study, the first step in a process whose ultimate goal is preventing Alzheimer’s disease in people with Down syndrome.  That both public and private funding sources support the study signifies the importance attached to Alzheimer’s disease and the valuable insights that will come from studies of this disorder in Down syndrome.  We wish to thank our colleagues as we eagerly look forward to helping people with Down syndrome and their families and loved-ones.”

Dr. Michael Harpold,  LuMind Research Down Syndrome Foundation’s Chief Scientific Officer, stated: “We are very excited the LuMind Research Down Syndrome Foundation has been able to work and join together with AC Immune, UC San Diego and NIH in establishing the first ever private-public partnership for a clinical trial in the field of Down syndrome. Accelerating research and the development of new potential therapies to address the developmental intellectual disabilities and earlier onset of Alzheimer’s disease in people with Down syndrome represents a major part of our foundation’s mission and commitment to prevent the earlier decline and loss of important gains they have attained throughout their lives.”

About ACI-24

ACI-24 is a liposomal therapeutic anti-Abeta vaccine candidate, which is owned by AC Immune and was discovered utilizing the Company’s proprietary SupraAntigen^TM technology platform. The vaccine is designed to stimulate a patient’s immune system to produce antibodies that specifically target the oligomeric and fibrillary Abeta proteins to prevent beta amyloid plaque accumulation and to enhance plaque clearance. Preclinical data demonstrated a significant activity in plaque reduction and memory restoration as well as a favorable safety profile characterized by a lack of local inflammation and a mode of action independent of inflammatory T-cells. The vaccine is currently also being studied in a phase 1/2a clinical trial in patients with mild to moderate AD, in which no significant safety issues have been detected to date.

About Down syndrome

Down syndrome, or trisomy 21, is the most common genetic cause of intellectual disability and developmental delay, and affects one in 700 newborns. This condition results when an individual has three, rather than two, copies of the 21st chromosome. This additional genetic material causes impairment of cognitive ability and physical growth, and is associated with other medical issues ranging from neurological and cardiac defects to hearing and vision problems as well as earlier development of Alzheimer’s disease. The average life expectancy for people with DS has increased from 25 years in the 1980’s to approximately 60 years today.

About Alzheimer’s disease

It is becoming increasingly clear that Alzheimer’s disease develops because of a complex series of events that take place in the brain over a long period of time. Two proteins – Tau and beta-amyloid (Abeta) – are recognized as major hallmarks of neurodegeneration: tangles and other abnormal forms of Tau protein accumulate inside the brain cells and spread between cells, while plaques and oligomers formed by beta-amyloid occur outside the brain cells of people with AD.

AD is one of the biggest burdens of society with a dramatic and growing worldwide incidence rate of one new case every three seconds, or 9.9 million new cases of dementia each year. Since the incidence and prevalence of AD increase with age, the number of patients will grow significantly as society ages. Worldwide in 2015 there are 46.8 million people living with dementia and by 2050 it is expected that global patient numbers will triple to 131.5 million. It is estimated that the annual societal and economic cost of dementia has risen from US$ 604 billion in 2010 to US$ 818 billion in 2015.  In the US, AD is now the 6th leading cause of death across all ages and is the fifth leading cause of death for those aged 65 and older.

About AC Immune

AC Immune is a leading Swiss-based biopharmaceutical company focused on neurodegenerative diseases with three product candidates in clinical trials.  The Company designs, discovers and develops therapeutic and diagnostic products to prevent and modify diseases caused by misfolding proteins. AC Immune’s two proprietary technology platforms create antibodies, small molecules and vaccines to address large markets across a broad spectrum of neurodegenerative indications. Alzheimer’s disease (AD) is the largest indication addressed by its products but the company’s innovative, differentiated and disease-modifying therapies are designed to shift the paradigm in the treatment of other neurodegenerative diseases such as Parkinson’s, Down syndrome, and Glaucoma. The Company has a large, diversified and promising pipeline featuring seven therapeutic and three diagnostic product candidates. The most advanced of these is crenezumab, an anti-Abeta antibody that is licensed to Genentech entering phase 3 clinical trials. Crenezumab was chosen by the US National Institute of Health for use in the first-ever AD prevention trial. The company has partnered three programs targeting Tau: ACI-35 with Janssen (therapeutic vaccine, phase 1b), Tau-PET imaging agent with Piramal (Alzheimer’s diagnostic agent) and anti-Tau-antibodies with Genentech (preclinical). The anti-Abeta vaccine ACI-24 phase 1/2a trial is run in house.

About UC San Diego Down Syndrome Research and Treatment Center

Established in 2009, the Center’s efforts focus on defining the genes and mechanisms responsible for the cognitive challenges faced by people with Down syndrome. Studies are carried out in both mouse models and in mouse and human cellular models.  The insights derived support translation of basic science findings into new treatments, using either existing drugs or through drug discovery. The Center’s work has resulted in conceptual innovations and several novel treatment targets and has inspired existing trials as well as the clinical study announced in this press release (supported by an NIH grant under award number R01AG047922). The Center is supported by the NIH and private foundations, including the LuMind Research Down Syndrome Foundation, the Alzheimer’s Association, the Tau Consortium and the Cure Alzheimer Fund.

About LuMind Research Down Syndrome Foundation

LuMind Research Down Syndrome Foundation, formerly the Down Syndrome Research and Treatment Foundation (DSRTF) and Research Down Syndrome, is an international non-profit organization with headquarters in Marlborough, Massachusetts, aimed at accelerating the development of treatments to significantly improve cognition, including memory, learning and speech, for individuals with Down syndrome. LuMind RDS Foundation is the leading source of private funding supporting Down syndrome cognition research at major research centers, including Johns Hopkins Medicine, Stanford University, University of California, San Diego, and University of Arizona. Since its founding in 2004, LuMind RDS Foundation has committed more than $13 million to fund results-driven research programs that will benefit children and adults with Down syndrome, and has been instrumental in the initiation of clinical trials now under way.

For further information please contact:

AC Immune

Prof. Andrea Pfeifer Chief Executive Officer Phone: +41-21-693 91 21 E-mail:andrea.pfeifer@acimmune.com	Eva Schier Corporate Communications Manager Phone: +41-21-693 91 34 E-mail: eva.schier@acimmune.com
Nick Miles Senior Consultant Cabinet Privé de Conseils s.a. Mobile : +41 79 678 76 26 E-mail : miles@cpc-pr.com	In the US Ted Agne The Communications Strategy Group Inc. Phone: +1 781 631 3117 E-mail: edagne@comstratgroup.comed

 

UC San Diego

William C Mobley, M.D., Ph.D. Professor of Neurosciences, and Executive Director, Down Syndrome Research and Treatment Center Phone: +1 858-534-9434 Email: wmobley@ucsd.edu

Scott LaFee Director, Media Relations Marketing and Communications UC San Diego Health Sciences Phone : +1 619-543-6163 Email : mailto:slafee@ucsd.edu

 

LuMind Research Down Syndrome Foundation

Carolyn Cronin President/Chief Executive Officer Phone: (508) 630-2178 Email: ccronin@lumindrds.org	Ellen Oliver Marketing Director Phone: (508) 630-2179 Email: eoliver@lumindrds.org
Michael M. Harpold, PhD Chief Scientific Officer Phone: (520) 297-3105 Email: mharpold@lumindrds.org

 

LuMind Research Down Syndrome Named an Official Charity Partner of the 2016 United Airlines NYC Half Set for Sunday, March 20, 2016

New York, November 17, 2015 — LuMind Research Down Syndrome Foundation was named an Official Charity Partner of the 2016 United Airlines NYC Half, it was announced today by Carolyn Cronin president and CEO of LuMind RDS. The race will take place on Sunday, March 20, 2016.

“The opportunity to partner with the United Airlines NYC Half gives LuMind Research Down Syndrome Foundation the ability to raise funds and awareness for valuable Down syndrome cognition research, including unraveling the connections between Down syndrome and Alzheimer’s disease,” said Cronin. “We look forward to having a dedicated team of runners take on the United Airlines NYC Half on behalf of our organization—training, preparing, and ultimately completing the 13.1-mile race for a cause that is both meaningful and close to each and every one of them.”

Over five million dollars was raised by more than 2,800 charity runners during the 2015 United Airlines NYC Half to help more than 100 nonprofit organizations support their missions and services. Approximately 120 official charity partners will be part of the 2016 United Airlines NYC Half.

LuMind RDS Runners will be running in the United Airlines NYC Half Marathon on 3/20/16.

LuMind RDS Runners is a vibrant community of dedicated parents, siblings, family members, and friends devoted to pushing physical limits in racing challenges to fund research on improving cognition in people with Down syndrome. The research they help to fund focuses on improving learning, memory, and sleep for people of all ages with Down syndrome enabling increased opportunities for independence at school and work. People with Down syndrome have an extra copy of the 21st chromosome, so LuMind RDS Runners “race for eXtraordinary,” especially during the month of March in honor of World Down Syndrome Day on March 21. LuMind RDS runners – and walkers will be participating in events all month with the United Airlines NYC Half Marathon as a capstone event.

“We welcome LuMind Research Down Syndrome Foundation as an official charity partner of the 2016 United Airlines NYC Half,” said Michael Capiraso, president and CEO of New York Road Runners. “We are privileged to partner with approximately 120 official charity partners for this event, impacting thousands in need of support for so many significant causes. Our charity runners are an inspirational and integral part of this race and we applaud their efforts and the positive impact they each make.”

The United Airlines NYC Half features some of the most talented American and international professional athlete fields and a vast range of competitive, recreational, and charity runners.  Some 1,500 volunteers and thousands of spectators line the course in support of all participants. 19,454 finishers completed the 2015 United Airlines NYC Half from nearly all of the 50 states and more than 67 countries. For the first time ever, the NYRR Times Square Kids’ Run at the United Airlines NYC Half gave hundreds of kids the opportunity to participate in a race of their own as they completed a 1500-meter out-and-back course through the heart of New York City.

The 2016 United Airlines NYC Half will be broadcast live locally on WABC-TV, Channel 7 for the fifth consecutive year. 

About New York Road Runners

Founded in 1958, New York Road Runners has grown from a local running club to the world’s premier community running organization, whose mission is to help and inspire people through running. NYRR’s commitment to New York City’s five boroughs features races, community events, youth running initiatives, school programs, and training resources that provide hundreds of thousands of people each year, from children to seniors, with the motivation, know-how, and opportunity to Run for Life. NYRR’s premier event, and the largest marathon in the world, is the TCS New York City Marathon. Held annually on the first Sunday in November, the race features 50,000 runners, from the world’s top professional athletes to a vast range of competitive, recreational, and charity runners. To learn more, visit www.nyrr.org.

About LuMind Research Down Syndrome Foundation

LuMind Research Down Syndrome Foundation, formerly the Down Syndrome Research and Treatment Foundation (DSRTF) and Research Down Syndrome, is a national non-profit organization headquartered in Marlborough, Massachusetts, aimed at accelerating the development of treatments to significantly improve cognition, including memory, learning and speech, for individuals with Down syndrome. LuMind RDS Foundation is the leading source of private funding supporting research at major research centers, including Johns Hopkins Medicine, Stanford University, University of California, San Diego, and University of Arizona. Since its founding in 2004, LuMind RDS Foundation has committed more than $13 million to fund results-driven research programs that will benefit children and adults with Down syndrome, and has been instrumental in the initiation of clinical trials now under way. To learn more: www.LuMindRDS.org.

Kate Dochelli Runs to LuMind RDS

We are happy to announce that Kate Dochelli has joined LuMind RDS to lead and grow the vibrant Runners program as well as coordinate special events for the organization. Kate has been a member of the RDS Runners program for several years and is poised to engage with runners since she is marathoner herself.

“I joined RDS Runners, now LuMind RDS Runners, two years ago. As soon I signed up for my first event, the Marine Corps Marathon, I received a call from Bob Schoen welcoming me to the community,” explained Kate. “It’s been such a great experience, learning about the research LuMind RDS funds as well as engaging with other runners around the country through the program.”

Kate’s introduction to the Runners program wasn’t without some bumps – literally. While Kate was training for the Marine Corps Marathon she was hit by a truck and suffered significant injuries that prevented her from competing in the event.

“Bob was in constant communication with my mom while I was in the hospital. We hadn’t even met in person yet and he was so concerned,” she said. That experience helped to solidify Kate’s warm feelings for the RDS Runners community, which have grown as she made friends from Texas to Minnesota.

A few weeks after the event while she was still recovering, Kate received an unexpected surprise. One day a shirt and letter arrived from the Marine Corps Marathon event organizers acknowledging all her hard fundraising and training efforts despite not being able to participate in the race.

“I learned that one of the Runners community members, Chad Simon, had arranged for a letter to be sent from the Marine Corps Marathon,” she explained. “It was such a nice, thoughtful gesture. It meant a lot to me during my recovery.”

Kate’s goal is to introduce new runners to this community and inspire and motivate existing runners whether they run 100 miles at a time or struggle to compete a fun run. She’ll also be motivating them to reach fundraising goals as they open opportunities for their loved one with Down syndrome.

“This community is so inspiring and so motivating. It’s a pleasure to be part of welcoming new runners and continuing to work and train with these amazing people,” she said.

The LuMind RDS Runners program welcomes people of all abilities who want to help raise funds for cognition research by competing in fun runs, road races, marathons, triathlons and relay races. “We say any race, any place, any date,” added Kate. “Just let us know your ideas and we’ll set you up with everything you need to prepare and fundraise.”

To learn more visit the LuMind RDS Runners page and request to join the LuMind RDS Runners Facebook group to join in the fun and raise money for Down syndrome cognition research!

#Race4eXtraordinary #Run4Ds

Recognizing the Pioneers in Down Syndrome Research – 2015 Awards Gala

We are so excited to be hosting our very first awards gala – The Sky’s the Limit – in Seattle on May 2, 2015.

We selected the Sky’s the Limit theme to represent the hope we feel. Thanks to your support over these 11 years, research that was once too complex to even consider is now experiencing tremendous breakthroughs. There are more discoveries, more exceptional, young researchers interested in pursuing careers in Down syndrome research, and interest from pharmaceutical firms to develop drug therapies.

Our inaugural event will honor five exceptional people who helped advance Down syndrome research. On Saturday evening, we will be presenting the following awards:

• Founders’ Award – Presented to Jim White and Patty O’Brien White on behalf of all those who were a part of the creation of the organization. This is a legacy award to be presented in 2016 and beyond to those who make an impact to the advancement of research.
• Dr. David Cox Rising Star Award – Presented to Dr. Jamie Edgin, University of Arizona
• Dr. William Cohen Researcher of Distinction Award – Presented to Dr. William Mobley, University of California, San Diego
• Luminary Award – Presented to Sarah Wernikoff, former Chairperson, LuMind Research Down Syndrome Foundation

About our Honorees:

Jamie Edgin, PhD, is an Assistant Professor in the Department of Psychology and the Sonoran UCEDD at the University of Arizona. Her research centers on studies of sleep and learning in Down syndrome, and she has been instrumental in devising new methods to measure cognition in those with Ds. Dr. Edgin serves on a number of community boards, including her service on the State of Arizona Developmental Disabilities Planning Council.

Dr. William Mobley, MD, PhD, is Distinguished Professor and Chair of the Department of Neurosciences at University of California, San Diego. He also serves as executive director of UCSD’s Down Syndrome Center for Research and Treatment. His research emphasis on the neurobiology of Down syndrome has brought new insights into Down syndrome, including possible therapies to improve cognition and unraveling the connections between Down syndrome and Alzheimer’s disease.

Sarah Wernikoff served as LuMind Board Chair from 2012-2014 and was a member of the LuMind board for 7 years. Her professional background includes over 15 years experience in ecommerce general business management, marketing strategy and planning, merchandising, and management consulting. Sarah has three children including an 11 year old daughter who has Down syndrome.

Jim White and Patty Ann O’Brien White are accepting this award on behalf of all of the people who were a part of the creation of the organization eleven years ago. Jim is a Managing Director with Sutter Hill Ventures and Patty is a marketing consultant at GSVlabs. The Whites have four children, including a daughter with Down syndrome.

If you would like to support the event, we are accepting donations in honor of the award recipients or for the event. Please learn more on our event page.

A big thank you to Confluence Health for their sponsorship of the Gala.

LuMind Foundation and Research Down Syndrome Have Merged

LuMind Foundation and Research Down Syndrome have combined resources and programs. Together, we have contributed nearly $12 million to stimulate cognition research, resulting in the discovery of multiple drug targets and supporting the initiation of four clinical trials.

The LuMind Foundation (formerly the Down Syndrome Research and Treatment Foundation – DSRTF) and Research Down Syndrome (RDS), worldwide leaders in advancing Down syndrome cognition research, together announce consolidation of the two organizations. The new foundation will pursue their shared mission more effectively and efficiently, and leverage the tremendous progress each has made to ignite Down syndrome cognition discoveries.

The merged organization will be named LuMind Research Down Syndrome Foundation. The LuMind Research Down Syndrome Foundation will be led by a national board of directors, consisting of board members from both organizations. Ryan Hartman will continue from his position as LuMind Foundation Chairman of the Board and Dan Flatley, Research Down Syndrome founder and Chairman, will serve as Vice Chairman.

Carolyn Cronin, recently named President and CEO, will lead the organization. Robert C. Schoen, Ph.D., formerly President, Research Down Syndrome, will be Director, Donor and Event Engagement. Dr. Michael Harpold will remain as the Chief Scientific Officer, leading the very successful research program. LuMind Research Down Syndrome Foundation will be consolidated and headquartered in Marlborough, Massachusetts.

“The LuMind Foundation and Research Down Syndrome have shared a mission of funding cognition research for people with Down syndrome and a Scientific Advisory Board for many years,” explained Hartman. “Our mission includes raising $25 million in five years to support Down syndrome research. Now we are coming together to speak with one voice on issues that are relevant to individuals and families in the Down syndrome community, and leverage resources to increase funds for research grants.”

It is the mission of LuMind Research Down Syndrome Foundation to stimulate biomedical research to accelerate the development of treatments to significantly improve cognition, including memory, learning and speech, for individuals with Down syndrome enabling them to participate more successfully in school, lead more active and independent lives, and avoid the early onset of Alzheimer’s Disease.

“Bringing the organizations together will increase our fundraising capacity and accelerate bio-medical programs that, in just a few years, have already demonstrated great success,” Flatley added.

Research funded by LuMind Foundation and Research Down Syndrome has led to the discovery of multiple pathways contributing to cognitive impairment that may serve as potential drug targets and four clinical trials testing possible drug therapies are currently underway.

Scientific Advisory Board Meeting – February 2015

The core of the LuMind Foundation’s successful research program is our Scientific Advisory Board (SAB), comprised of the brightest minds in research across disciplines and from around the world. Lead by our Chief Scientific Officer, Dr. Michael Harpold, the SAB met in person in mid-February to guide the organization’s mission to fund the most promising lines of discovery.

“Thank you to all the members of the LuMind SAB for volunteering their time from their very full schedules to attend the SAB meeting,” said Dr. Harpold. “We value their thoughtful expert perspectives and contributions in reviewing the progress of the current LuMind-supported research and strategic research directions to further advance and accelerate progress.”

The SAB continues to be enthusiastically unified that the LuMind Foundation Research strategy, program, and grants continue to be remarkably successful and transformative for Down syndrome cognition research and its potential for creating significant and meaningful new opportunities for children and adults with Down syndrome.

The SAB meeting and discussions provide a foundation for the next steps in further assessing research projects and developing recommendations for the next new 2015-2016 LuMind Foundation Research Grants.

Truly heartfelt thanks and appreciation for each of the SAB members for their continued dedication to working with the LuMind Foundation to continue to advance critical, influential and game-changing new Down syndrome cognition research.

Members of the SAB are:

• Michael M. Harpold, PhD, Chair – Scientific Advisory Board and Chief Scientific Officer
  LuMind Foundation
• Ronald M. Evans, PhD, Professor and March of Dimes Chair in Molecular and Developmental Biology, Gene Expression Laboratory, Salk Institute for Biological Studies
• Leslie Leinwand, PhD, Professor, Molecular, Cellular and Developmental Biology, University of Colorado
• Lynn Nadel, PhD, Regents’ Professor of Psychology, University of Arizona
• Roger Harper Reeves, PhD, Professor, Department of Physiology, Johns Hopkins University
• André Strydom, MBChB, PhD, Senior Clinical Lecturer, Intellectual Disabilities and Mental Health Sciences Unit, University College London

You can read more about the SAB on our website, including more about our SAB members.

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.

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!

LuMind Foundation Honored to Receive $50,000 gift

Inspiration never looked so dapper!

We have the best, and best-looking, supporters!

Dr. Sohail Masood, a long-time LuMind Foundation board member and his family foundation, Dysimmune Neuromuscular Diseases Foundation, made a gift of $50,000.

Dr. Masood’s son (right) has Down syndrome and we must say, he wears it and that tuxedo, well!

Thank you to the entire Masood family and the Dysimmune Neuromuscular Diseases Foundation.

LuMind Foundation Receives Founder’s Gift

We are so fortunate! Our founders had a vision ten years ago when they started LuMind Foundation. They saw the possibilities that would be created if cognition was increased by 15% in people with Down syndrome.

Since public funding for Down syndrome research was very limited (and still is), they made the decision to create a pipeline of private funding to engage researchers. Nine drug targets and four clinical trials later, their vision – more independence – is closer to becoming a reality.

Thank you, Jim and Patty White, for your gift. You have inspired so many people with your vision!