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WORLD DOWN SYNDROME DAY 2015

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DOWN SYNDROME CREED

 Celebrating

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 MARCH 21(3/21) IS
WORLD DOWN SYNDROME DAY

Click here for an explanation by Down Syndrome International (DSI) of the significance and the evolution of the date.

 OUR ANNUAL WDSD FUNDRAISER 
BENEFITS DOWN SYNDROME RESEARCH
 
 READ: 
 
 
OUR WDSD 2015 DONATIONS TO RESEARCH

$10,000.00 to LuMind Research Down Syndrome Foundation. Or, $30,000.00 through their 3:1 project.

Through LuMind Research Down Syndrome Foundation, we support research directed towards the discovery of potential drugs to assist memory, learning, and communication in persons with Down syndrome, and help offset the impact of Alzheimer's disease.

$5,000.00 to the research that Dr. Xiao-Fei Kong, Clinical Scholar at Rockefeller University, is conducting.

As a Clinical Scholar and associate attending physician at Rockefeller University Hospital, Dr. Kong aims at characterizing the gene dosage effects of interferon receptor genes to understand the clinical and immunological features of Down syndrome.

 

Alexander's Angels has shared $435,338.00 since 2007. Click here for details.

2015

At Long Island Wine Country! 

 Saturday, March 21 and

Sunday March 22, 2015

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SATURDAY, MARCH 21, 2015

OPENING RECEPTION 

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 6th Exhibition

  Amazing works of artists with Down syndrome 
Terra Cotta Gallery 
At Castello Di Borghese Vineyard and Winery, Cutchogue, NY 
Saturday, March 21 to Sunday, April 19, 2015
Click on the picture above for information and pictures of the exhibition 

 

After the DOWNrightART Opening Reception,

the celebration continued at:

 Macari Vineyard

Mattituck, L.I., NY

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Macari Vineyard

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The charming building and tasting room predicted a very enjoyable evening.  A beautiful sunset, seen through full length windows, took our breath away as we stood on the buffet line. 

 

 

Self-introduction of guests with Down syndrome and a toast to them! 

Charles Brennan Self-Introduction at dinner
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Self-Advocate Kyle Erickson introducing himself

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Jillian Dolan at the microphone

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A toast to all our guests with Down syndrome by
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Esther Gomez-Nieto, President of Alexander's Angels
 

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Carolyn Cronin's gift to Ellen Oliver of LuMind DS Research Foundation? L.I. Wine!

 

Benefit Dance Performance

 

Fully Sponsored by 

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 Presenting their third production of:

 
A Benefit by NuBella Productions dedicated to the most beautiful and unique among us.
For pictures of the earlier productions, click on the title or on the logo above. 

         

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Juliet Dolan, NuBella Productions Founder and Artistic Director

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Elisabeth Miller, Producer and Dancer

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Laure Ann Creus, MC and Vocalist

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Nic Bilbao, Choreographer and Dancer

 

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Jonathan Castellanos, Choreographer and Dancer

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Dexter Carter, Choreographer and Dancer

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Melody Domfort, Choreographer and Dancer

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At rehearsal.  Sitting:  Meghan Latini and Katherine Giunta.  Standing: Gena Novelli, Jillian Dolan with Juliet Dolan, and Elisabeth Miller.

 

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From left to right, Laurie Ann Creus, Jonathan Castellanos, Ashley Munford, Melody Domfort, Dexter Carter, Jillian Dolan, Juliet Dolan, Christina Elivert, Katherine Giunta, Meghan Latini, Elisabeth Miller, Gena Novelli, Jacquelyn Dolan.

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Kyle Erickson joined NuBella Productions for a last dance as they were getting ready to leave!

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Commenting about the day's activities after dinner.

 SUNDAY, MARCH 22, 2015

 Our visit to

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   431 East Main Street, Riverhead, NY 11901

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Picture taken by Self-Advocate Kyle Erickson

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Kyle Erickson at the entrance of the Aquarium.

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Picture taken by Self-Advocate Kyle Erickson

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The Belletti sisters and brothers

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The Belletti Family

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Allie and Samantha with a "big" bird!

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Picture time!

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It was cold but the sea lion show warmed our hearts!

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Bundled up to watch the sea lion show!

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Alexander at lunch with sisters Jenna and Nicole and cousin Lauren. We had a great time!

See you next year! 

Scroll down for other WDSD celebrations!

 
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 2014

Believe in the Possibilities

March 17, 2014

March 22 and 23, 2014

 

 
 
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in collaboration with
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Total donations of $12,000 included $2,000 raised by Heritage High School, Littleton, CO. (scroll down for story and pictures)

The Lu-Mind Foundation, Research Down Syndrome Foundation, and Rockefeller University each received $4,000.

 

Monday, March 17 
FUNraiser at
Friendly’s
Bay Shore, Commack, Smithtown 
Total Raised: $740.00

 

Saturday, March 22 
Why is Down syndrome research important?
A symposium
Dr. Michael Harpold, PhD, Dr. Xiao-Fei Kong, M.D., 
Dr. Patricia White, M.D. 
 
Followed by a Reception

 
 Saturday, March 22 
Sunday, March 23 
Let the Angels In
A Dance Benefit by
NuBella Productions
Producer:  Juliet Dolan 
 

CLICK HERE TO ACCESS Dr. Harpold's PRESENTATION

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Michael Harpold, PhD.
Chief Scientific Officer of the Down Syndrome Research and Treatment Foundation (DSRTF).
 
Dr. Harpold will address the exciting progress of research to improve cognition, including memory, learning and speech.

 Dr. Harpold has served as Chair of the DSRTF Scientific Advisory Board since its inauguration in 2006. He has been involved with DSRTF since 2005, and has served as member of the Board of Directors (2006-2010) and Chief Executive Officer (2007-2010). Dr. Harpold has more than 35 years experience in biomedical research within both academia and the biotechnology industry. Prior to joining DSRTF, Dr. Harpold established EnkephaSys, Inc. as a consultant on research, business, and intellectual property issues for pharmaceutical and biotechnology companies. In addition, Dr. Harpold was a founding member and an executive of The Salk Institute Biotechnology/Industrial Associates, Inc. (subsequently SIBIA Neurosciences, Inc.), a biotechnology and pharmaceutical company in La Jolla, CA. There he served, for 17 years, as the company’s Vice President, Research through its IPO and prior to its acquisition by Merck. A distinguished molecular and cellular biologist, Dr. Harpold received his Ph.D. in molecular and developmental biology from Tulane University. He conducted postdoctoral research in molecular cell biology as a Helen Hay Whitney Fellow at The Rockefeller University in New York. Subsequently, Dr. Harpold was a faculty member in the Department of Biochemistry, USC Keck School of Medicine and Member of the Norris/USC Comprehensive Cancer Center, following which he held a senior research appointment with La Jolla Biological Laboratories of The Salk Institute. Dr. Harpold’s research has involved diverse problems in molecular biology, biotechnology, and biomedical science, including significant contributions to research in molecular signaling in the nervous system as well as drug discovery primarily focused on disorders of the nervous system. He is the author of numerous scientific research publications and his work has led to 47 issued U.S. patents as well as an extensive set of foreign patents.

 

Please click here to link to the Rockefeller University Hospital page with details about Dr. Xiaofei Kong’s research study for families that may be interested.

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Xiao-Fei Kong, M.D. PhD.
Rockefeller University Sponsored Research and Program Development.

Dr. Kong’s presentation will include the difference of the immune system in Down syndrome within the framework of how the human immune system works.

 Dr. Xiao-Fei Kong received his MD from the Yangzhou University in China, and his PhD from the Université Pierre et Marie Curie in Paris, France. He completed his Residency in internal medicine and Fellowship in infectious diseases at Ruijin Hospital, Shanghai Jiaotong University, School of Medicine in China. Dr.Kong hold an ECFMG certificate. As a Clinical Scholar and associate attending physician at Rockefeller University Hospital, Dr. Kong will be characterizing the gene dosage effects of interferon receptor genes to understand the clinical and immunological features of Down syndrome.
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Patricia White, M.D.
Director on the Board of the Reasearch Down Syndrome (RDS) Foundation.

Dr. White will emphasize the need for support for Down syndrome research

 Dr. Patricia White is a board certified Internist and Fellow of the American Academy of Physicians.  She received her M.D. from the State University of New York, Downstate Medical Center. She joined the Department of Internal Medicine at New York Medical College, where she was actively involved in medical student education and residency training, was an investigator in several clinical trials, and served as the Director of the outpatient medical clinic at Westchester County Medical Center and Director of the Medical Research Associates Headache Center. She retired in 2001 as an Assistant Professor of Medicine.  Patricia and her husband have five children, including a son who has Down syndrome. In addition to her involvement with numerous local and national advocacy activities, Patricia has been leading participant in the Down syndrome cognitive research effort and participates in numerous local and national support and advocacy activities on behalf of those with Down syndrome.
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Juliet Dolan
Founder and Director, NuBella Productions

This is Juliet’s second Let the Angels In Benefit Performance on behalf of the Down syndrome cause. The dance production will include dancers with Down syndrome, including a return performance by Juliet’s sister Jillian.

 

Juliet graduated from Queens College with a Bachelor’s Degree in Dance.  At age 7, she began tapping and by age 12, she began studying ballet, jazz, contemporary and modern dance. She aspires to direct and choreograph benefit dance performances to raise funds and awareness for human rights causes.  Juliet was a contributor to their Student Choreography Showcases, Faculty Showcases, and joined their nationally ranked Dance Team at Queens College.  She has combined her passion for dance and helping others to culminate successful fundraisers for the National Center for Missing and Exploited Children, and The Carcinoid Cancer Awareness Network. 

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Michael Rexroad (front row, second from left) 
Mrs. Barbara Bolen's Marketing Class 
HERITAGE HS, LITTLETON, CO 

 

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 Michael Rexroad chose Alexander's Angels as the subject for an assignment by Mrs. Bolen to research a non-for-profit. 
Alexander's Angels was chosen among the projects to be the recipient of a fundraiser to be held at Heritage High School. 
 
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Thank you Michael
for the $2,000 check!
Thank you Mrs. Bolen
and the Marketing Class!
Thank you Heritage High School!

   
Press coverage:
Click 
here and here and here

 

  

 

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2012

 

Abilities and Posibilities  

 March 21 to March 23, 2012

 

MARCH 21, 2012 

Opening Reception

5th Exhibition

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MARCH 22, 2012

Acting in Films presented by Sprout

Short filmsBe Good to Eddie Lee, DUO, Jackie Blonde, and sogs by rapper LAZ D. 

FilmYo Tambien (Spain) With Award Winning Actor Pablo Pineda  

FilmMr. Blue Sky
With attendance and participation of leading actress Ashley Wolfe,
her mother in real life Nancy Wolfe who plays the role of her mother in the movie, 
and Writer and Producer Tom Lee

Self-Advocates Panel

Chris Diedo, David Egan, Kyle Erickson, David Guhl, Ashley Wolf
 
Symposium on DS Research
 

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Actress Ashley Wolfe who plays the lead role in Mr. Blue Sky addresses the audience as a self-advocate panelist.  Her passionate presentation generated many questions from the audience.

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Christopher Diedo waits for his very informative power point presentation to be uploaded.  Looking on is Kyle Erickson, a very witty self-advocate who grabbed everyone's attention as he presented his relevant message.

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David Egan, Ashley Wolfe and Dave Guhl listen attentively to their fellow self-advocate presentations.  Dave made a presentation as powerful as his artwork, while David and Ashley generated a great deal of audience participation.  All self-advocate panelists left a long lasting impression with the audience.

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Charles Brennan with Chris Diedo at the end of the Self-Advocate Presentation

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Dr. Michael Harpold brought the audience up to date with the symposium Rapid and Dramatic Progress in Down Syndrome Cognitive Research – New Research Discoveries to Clinical Trials

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The audience listens attentively to the breaking news presented by Dr. Michael Harpold. 

 

MARCH 23, 2012
 
Documentaries on Siblings by Sprout
 
SIBLING PANEL:
Rebekah Diedo, Nicole Gomez-Nieto, Lisa Guhl Mcliver, Sherry Skramstad, Dr. Brian Skotko, M.D.
 
Film My Brother directed by Anthony Lover
with Vanessa Williams, Nashawn Kearse,
Tatum O'Neil and Christopher Scott
 
CONCERT
Chris Burke and his Band

 

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 Sibling Panelists Professor Michael Gibbons (Gettysburg College, PA), Nicole Gomez-Nieto (with brother Alexander standing behind her) and author Sherry Skramstad listening to Dr. Brian Skotko (Children's Hospital, Boston, MA) who presented via teleconference.

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Dr. Brian Skotko visible on the small screen interacts with author Sherry Skramstad as Nicole and Alexander Gomez-Nieto listen.  Paintings by Bernadette Resha, Eric Behnke, and Dan Makar are visible in the background.

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From left to right panelists Rebekah Diedo and Lisa Guhl MacLiver joined by their brothers Chris Diedo and Dave Guhl; author Sherry Skramstad who spoke of her sister Wendy, the subject of her book Wendy’s Wisdom: The Challenges and Accomplishments of a Woman with Down Syndrome. The paintings in the background are, on the left Marilin Rivera's of Puerto Rico, and on the right Matt Albin's of California.

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Actor Chris Burke speaks with Charles Brennan before the concert that closed the event.

Chris Burke and his band energize the audience

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After spending three wonderful days together, it is time to say good-bye.  From left to right actor and musician Chris Burke, photographer Christopher Diedo, painters Daniel Makar, Charles Brennan, and David Guhl.