Archived News Releases

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May 25, 2008

Alec Sweazy Solo Recital

Wednesday, June 11, 2008, 7:30 P.M.

Normandale Hylands United Methodist Church

9920 Normandale Boulevard, Bloomington, MN

 

 

You remember him from KARE-11 Extra, the young man with a passion for music.  Please join Alec and friends in the beautiful, new sanctuary at Normandale Hylands United Methodist Church and treat yourself to an evening of music that you won’t soon forget.

 The program will feature piano works by Bach, Beethoven, Rachmaninoff, Khatchaturian, and Bartók.  Alec will close with a variety of delightful numbers on accordion.    

  Everyone is welcome to this free event, with a reception to follow. 

December 31, 2006

Replays: Using Play to Enhance Emotional And Behavioral Development for Children With Autism Spectrum Disorder (Paperback) 

by Karen Levine and Naomi Chedd

Now available at amazon.com

Replays:

 

Replays integrates play therapy methods with what we know about the roles of interaction, communication and play in the development of emotional and behavioral regulation.  Replays can be used by parents, teachers and therapists across all disciplines (Speech therapists, Occupational therapists, Psychologists etc).  

 

Whereas the book title states it is for children with Autism, Naomi and I have developed and used this technique for children with a broad range of developmental issues impacting emotional and behavioral regulation, including children with WS.  For children with Williams syndrome, it can be very helpful for issues around anxiety and fears including sound related fears.  It can also be helpful for sensory issues such as not wanting to wear hats/shoes/have haircuts etc.  It can also be helpful for children who have a 'hair trigger' response of upset to seemingly small events. 

 

While Replays cannot cure fundamental heightened sensitivity, it can prevent secondary issues that develop such as anticipating feared events, and it can also often help children be much less afraid even in response to issues that seem to be primarily sensory (e.g. haircuts) as often, while the child develops over time, their actual sensory tolerance has grown, but they have not been able to learn new response patterns to these 'trigger' events as they have acquired so much anxiety associated with them.  The adults too (parents, teachers) become anxious as these events approach. Because Replays relies on a very playful series of interactions, it can help eliminate the secondary upset for both children and adults. 

 

Replays can be used in conjunction with most other techniques such as relaxation, sensory integration, positive behavioral supports and Social Stories TM. 

 

When the child is laughing and asking for repeat performances as you playfully help them act out their fears, that means you 'got it right'!  We hope you have fun as you use this approach and that it helps your children or students.

 

Karen and Naomi 

 

Please read this Word document for more information about Replays.

November 14, 2006

The Strangest Song
One Father’s Quest to Help His Daughter Find Her Voice The Compelling Story of the Link Between a Rare Genetic Disorder and Musical Talent
....
Teri Sforza with Howard and Sylvia Lenhoff
....Read the review by Chris Leppek of the Intermountain Jewish News Read the story "Behind the Music" by Greg Reinzi of Johns Hopkins Magazine
"An inspirational diary of a daughter with a marvelous musical gift. And a hopeful roadmap for other parents that reveals what dedication, determination, belief, inquiry, cheer-leading, love and advocacy can do when the focus is on ability rather than dis-ability in children with handicaps. 'Train the talent - in whatever form and in whatever measure it exists - and do so with joy,' sings out loudly from the pages here in convincing and extraordinary song. Gloria wants to make the world more ready for William’s people. She does. Bravo Gloria!" DAROLD A. TREFFERT, MD Author of Extraordinary People: Understanding Savant Syndrome Clinical Professor, University of Wisconsin Medical School “Teri Sforza has done a masterful job in telling a story that not only touches us, but gives us a deeper understanding of Williams Syndrome. Like a complex puzzle, the story unfolds as more and more pieces come together to make a rich, colorful and unexpected picture. Bravo Teri.” ARLENE ALDA Award-winning children’s book author/photographer Director of the documentary film Bravo Gloria     “This book should serve as inspiration to many people who are facing overwhelming odds. Gloria Lenhoff’s story of perseverance and passion is a model for all of us. From the first day I met her, I could sense her uniqueness and potential through her veil of disabilities. Teri Sforza’s book documents the triumph of a family, united in purpose to understand a difficult situation and convert it into a warm and spectacular success story.”                                                                                       DAVID AMOS,  Conductor, Tifereth Israel San Diego Community Orchestra   This is the first book to tell the story of Williams syndrome and the extraordinary musicality of many of the people who have it. Interweaving science and the personal in a compelling narrative, author Teri Sforza follows the quest of biochemistry professor Howard Lenhoff to help his mentally handicapped daughter, Gloria. From his discovery of Gloria’s outstanding vocal talent and innate musical gifts, Lenhoff becomes convinced that people with her disorder have an unusual capacity for learning music, despite their profound mental disabilities. Lenhoff is at first rebuffed, called crazy, and finally vindicated when scientists — and his own formal research — confirm his hunch. Williams syndrome is a rare genetic aberration that occurs once in every 7,500 births. It springs from a peculiar mishap on the molecular level, a tiny chemical error, but one that exacts an enormous toll on body, brain, and personality. The result is an atypical body and a profoundly asymmetrical mind. Thanks to Howard Lenhoff’s single-minded determination and love for his daughter, he succeeds in helping his daughter beyond his wildest dreams. Gloria’s talents take her to a concert at Washington’s Kennedy Center and a number of classical recordings. Besides his daughter’s personal success, Lenhoff helps establish the first residential college for mentally disabled musicians in Massachusetts, where today talented Williams people are finally getting professional training and performing at professional levels. An inspiring blend of human interest and breakthrough science, The Strangest Song offers startling insights into the mysteries of the brain and hope that science can find new ways to help the handicapped. Teri Sforza (Laguna Beach, CA) is a senior writer at the Orange County Register, where she contributed to its Pulitzer Prize-winning investigation of fertility fraud at the University of California, Irvine, and covered the largest municipal bankruptcy in America's history. She is the winner of an Associated Press News Executives Council award for public service reporting and a Lowell Thomas prize for travel writing. Howard Lenhoff (Crescent City, CA and Oxford, MS) is Professor Emeritus, University of California, and Adjunct Professor, University of Mississippi. He is author of 12 books, the latest being Williams-Beuren Syndrome: Research, Evaluation, and Treatment, Johns Hopkins University Press, 2006.
....
....
PAGES: 296 pp	COMMENTS: Photos, Bibliography, Index
ISBN: 1-59102-478-1	BINDING: Hardcover
PRICE: $24  Click Here to Order for 20% Discount and Free Shipping	SIZE: 6 x 9

 

October 23, 2006

Free Japan-U.S. Harmonic Concert featuring Ws Musicians scheduled for Nov. 18, 2006 in Anaheim, CA

Click here to see the event poster.

Steve Yanez, whose child has WS, is interested in getting a large group of families together to come see the performance.  If you are interested in attending as a group, please call Steve at (562) 602-2587.

 

 

KINTETSU INTERNATIONAL EXPRESS (U.S.A.), INC. Harmonic Concert Executive Committee

                   879 W 190^th Street, Suite 720, Gardena, CA 90248-4220

               Tel:  310-525-1670               Fax:  310-525-1671

 

Press Release

Japan-U.S. Harmonic Concert

 

            The second annual Japan-U.S. Harmonic Concert, a joint performance by developmentally-challenged individuals from Japan and America, is scheduled to take place on Saturday, November 18 in Anaheim, California.  The concert will feature nine separate performances by various groups from the two countries, including singing, dancing, and playing of various musical instruments. 

            There will be six groups coming from the Southern California Area: Hope School, Hi-Tops Dance Team, Hope University, Creative Identity, Performing Arts Studio West, and Japanese Speaking Parents Association of Children with Challenges (JSPACC).  In addition to these local groups, three groups will be coming from Japan to perform as well: Manbow, Darjiling, and Yuu Takahashi. 

            The concert promises to be moving and entertaining—just ask anyone who attended last year’s inaugural concert!  This year will be just as spectacular, with performances by both new groups and groups that participated last year who couldn’t wait to participate again.  All groups feature developmentally-challenged youth and adults who put their hearts and souls into their creative talent, putting together a show that rivals performances by those without such inhibiting challenges. 

            In addition to the group performances, this year will also feature keynote speeches by spokespeople for disabilities and the arts representing Japan and America.  The representative from America will be Diana Jordan, acting coach at Performing Arts Studio West, a professional performing arts training studio for adults with developmental disabilities located in Inglewood.  The representative from Japan will be Yoshihiro Kaiya, executive director of the Gold Concert, a performance contest for developmentally-challenged performance groups.

 Supporters of the event include the Anaheim/Orange County Visitor & Convention Bureau, the Japanese Association of Intellectual Disability, and Kyosaren (Japan Association of Community Workshops for Disabled Persons).

             To catch a glimpse of this exciting concert, come to the Heritage Forum, 201 East Broadway Ave., Anaheim, CA 92805.  Doors open at 12:00 p.m., and the concert starts at 12:30 p.m.  Keynote speeches will be followed by group performances.  Admission to the concert is free of charge.

             If you are interested in the event and would like more information, please contact Katie Conlon at (310) 525-1670, ext. 279 or by email at Katie.Conlon@kintetsu.com.

March 9, 2006

Medical Incredibles

The "Discovery Health" Channel is showing a segment dealing with Williams Syndrome and Music, featuring Gloria Lenhoff. It will be part of a program series called "Medical Incredibles" and is scheduled to air on Monday, March 13. Check for your local times for your area.

The synopsis that Discovery Health Channel gives that segment is:

"Gloria Lenhoff has an IQ well below average but that hasn't stopped her from pursuing her dreams and singing in a Memphis Opera.

Gloria struggles with every day tasks like tying her shoe laces and yet she sings with perfect pitch in multiple languages, producing every note and word from her prodigious memory. She has even performed solo with the San Diego orchestra.

Gloria's gift is a by product of a baffling congenital abnormality called Williams Syndrome, a disorder scientists call a ³beautiful mystery² because of the musical gift that comes with the territory."

NOTE: The show's episode is titled "Implant for Tourette's".  The Williams Syndrome segment is one of 6 on the show, scheduled to air at 9PM Eastern.  Please check your local listings for air times in your area.

 

October 16, 2005

Naomi’s Corset  (co-presented by the Disability Network of New York City)

A Williams syndrome movie-- set to participate in the Margaret Mead Film Festival in New York City at 8:00 PM November 5, 2005

In the movie Naomi talks about herself and her experiences . It is a very beautiful movie and Naomi is very proud of it.  The movie passed on Israeli TV and was selected in several festivals in Israel and Europe. In France, at the FIPA in Biaritz, it received a special mention from the jury.

We think that this movie can interest you and you may-be know other people or organizations, who could be interested.  We think it is an important movie and that it contributes to the understanding and the great possibilities of our WS children.

--Henriette Allon,  Director Williams Syndrome Israel

 

Synopsis

 At age ten, Naomi faces one of the most trying times in her life. As a result of severe scoliosis (spine curvature), she is forced to wear a stiff orthopedic corset 23 hours a day.

 Diagnosed at infancy with Williams Syndrome, a rare genetic disorder, Naomi is especially sensitive to extreme emotional and physical situations. Facing the audience she expresses her thoughts candidly; ‘The worst thing is the corset; so, watch out doctors, I can be very tough with you…’

 Naomi and her father Gérard, an accomplished artist, decided to make a film about the corset with the hope of alleviating her anxieties. For over two years the camera follows Naomi: she shares her innermost feelings, poses and dances, studies, travels and finally enters into the operating theater where she undergoes an extensive spine surgery.

 Naomi’s Corset combines day to day documentation, stills, X rays and true accounts of medical procedures, juxtaposing “cinéma vérité” and “video art”. This complex and provocative filmmaking transforms a father-daughter relationship from the private to the public sphere.

 

August 13, 2005

Special Olympics is releasing research on the barriers to health care for people with intellectual disabilities. The research clearly shows that dentists and doctors are not providing access to health care for people with intellectual disabilities and people with intellectual disabilities have some the worst health care of any minority population.

To view the complete information on this study and to download a copy of the summary presentations and photographs, please visit http://northamerica.specialolympics.org/research/. To schedule an interview with an expert, or for more information, please contact me at (202) 715-1155 or research@specialolympics.org.

Best Regards,
Randy Borntrager
Special Olympics, Inc.

Please click here to read the complete article.

April 18, 2004

CD by Gloria Lenhoff inaugurates the Music Minus One new series in Inspirational Music.

Music Minus One, Inc. (MMO), is the premier record company that started the Karaoke rage in 1950 by producing records and cassettes of classical music. Later they branched out to their Karaoke series, Pocket Songs, for popular music and show tunes.

In 2003 they introduced Williams syndrome musical savant Gloria Lenhoff to the commercial world of CD through her Pocket Song CD 1600, Religious Classics. In April. 2004, they "upgraded" PS 1600 to MMO 4040. The latter album not only has the CD, but also an attractive book which has the complete notation of the music accompaniments of the songs Gloria sings on the CD.

The CD PS 1600 can be obtained from the WS Foundation for a donation. To purchase the CD and music book (MMO 4040), see www.musicminusone.com.

 

 

December 7, 2003

Tokyo Broadcasting airs Williams syndrome special

Tokyo Broadcasting System, which owns one of Japan's major televisions, aired a program on Williams syndrome on November 29, 2003. The Japanese TV crew was at the last session of the WS Music Camp at Belvoir Terrace in August, at Gloria Lenhoff's concert in San Diego in June, and at a number of the laboratories of WS researchers.

Masahiko Sugimoto, a WS father who runs the WS web page in Japan, wrote that after the program, the web site had a record over 10,000 hits, and he received many emails from new WS families. He also wrote that the program was informative and gave a true picture of WS.

 

September 8, 2003

Gloria Lenhoff's music featured on Public Radio Classical Music Program

Although Gloria Lenhoff and numerous musicians with Williams syndrome have been interviewed on Public Radio in the past, today, September 8, 2003, marks a landmark event for musicians having Williams syndrome. This morning, Jefferson Public Radio, which serves a vast area in southern Oregon and Northern California, played a CD track featuring Gloria Lenhoff singing Samuel Barber's "Sure on This Shining Night", the words coming from a poem by James Agee.  She was accompanied by Jeff Burnam of the University of Mississippi faculty.

The piece is from one of the two CDs produced this year featuring Gloria. This one, "Gloria Lenhoff Live", will be available for donation/purchase from the Williams syndrome Foundation on October 7.

 

 

February 22, 2003

BHMA, Tori Ackley and Lisa Walsh featured on NPR

On February 19, 2003, the Berkshire Hills Music Academy was featured on local radio NPR affiliate WFCR 88.5FM.  

"In the next few months, college-bound high school seniors will hear from the schools and universities where they hope to spend the next four years. But it's a different story for young people with special needs, who have very few options available to them. The Berkshire Music School, in South Hadley, Massachusetts, has been established to help fill the gap. WFCR's Charlene Scott reports." (2/19/03)

January 18, 2003

Trieana Moon Update -- MUSIC IN HER SOUL

TRAP/ Gifted Records is releasing our first CD. The CD is entitled Trieana.
Trieana Moon is one of my students at the Ojai Enrichment Center. She has
Williams Syndrome, a rare genetic disorder. She has developmental delays
coupled with some physical deficits. In spite of this, she is absolutely
brilliant, soulful and powerful as a singer/ piano player, which will become
obvious when you hear her debut CD. Some of you already know her, some of
you played on the CD, all of you will agree that this, her first effort, is
outstanding. Dion Cornejo, a young man with Downs Syndrome and another of my
students from the Y-Spirit program in Pasadena also appears on the CD.
Gifted Records is presented by TRAP as a vehicle to provide professional
recording for people with disabilities. I am eternally grateful, if it was
not for the generosity of so many of my friends, there would be no record
company and these folks may otherwise never have this kind of opportunity.
So many people with disabilities are truly talented and deserving. It is my
intention, with your help to create this environment for many more folks
like Trieana. All of the proceeds of this CD and all the CD's we record in
the future will go to support various programs for the disabled.

The CD is available via internet at Planet CD.

With my deepest gratitude and respect,

Eddie Tuduri, TRAP- The Rhythmic Arts Project

Working in Harmony to achieve physical, Psychological and spiritual wellness

To learn more about TRAP, go to http://www.traponline.com

To learn more about Gifted Artists Records, go to http://www.giftedartistsrecords.com.