PWS IN THE NEWS

Drs. Prader and Willi first identified and described Prader-Willi syndrome in 1956. Almost 50 years later, the media has made the same discovery. Yet, with all the media exposure that PWS has had in 2005 and 2006, the familiar comment still comes back, "Prader-what? I've never heard of it!" And so the struggle for awareness continues…..

There just isn't enough space in the Gathered View to list all the publicity that Prader-Willi syndrome has been receiving, beginning with March 2005. So the web site will show all the publicity that Prader-Willi syndrome has been getting in the form of newspaper articles, radio shows, and presentations. Please let the office know if you have an item to add—or if you have a correction.

Rome News-Tribune, Rome, Ga., May 25, 2008 - Michael Paul, who has PWS, is an avid fisherman, was sworn in as an honorary sheriff, loves art, sings in a Just As I Am choir and occasionally is soloist, and helps with a children's program at his church. The article describes the syndrome and also mentions Clyde May who died tragically at age 25 and was Michael's first friend who also had PWS. The Rome Braves will recognize Prader Willi syndrome during Thursday’s 7 p.m. game at State Mutual Stadium. Posters and literature will be available to educate the public about the syndrome.

Queens Courier, NY, April 30, 2008 -- Sonny Roberto, 6-year-old son of Tom and Nina Roberto who is Executive Director of the Prader-Willi Syndrome of New York chapter, was featured in the article about him and the syndrome.

Henderson Gleaner, Henderson, KY, March 18, 2008 -- The parents of Mickey Phernetton, age 11, feel they are driven to work for the PWS cause. When she was born, Lisa and Patrick learned all they could about the syndrome. Then they started doing fundraising events, first a series of benefit concerts and then earlier this month, a charity boxing match. Thus far they have raised over $25,000, some going to research and the rest set aside for a future group home for people with PWS.

Sarasota, FL, PRWeb, press releases for March 22, 2008 -- An excellent article appeared on this web site regarding two recent bills which were drafted to reclassify human growth hormone as a Schedule III controlled substance. After a considerable response of constituent concerns, Senator Charles Schumer and Representative Stephen Lynch have temporarily removed the bills from the Congressional fast track to amend the language to preserve access to HGH for legitimate medical use in addition to addressing the abuse issues.

Newport News, Newport, OR, Feb. 13, 2008 -- Sequoia Chavez, 16 months old with Prader-Willi syndrome, is featured in this article, along with all the Early Intervention services she is receiving and the good progress she is making

ABC News, Feb. 6, 2008 -- Featuring Haley Davis, 5, who has PWS, the article has information about PWS and includes quotes from PWSA (USA) Director of Research and Medical Affairs Janalee Heinemann, Scientific Advisory Board Chairman Merlin Butler M.D., and PWSA (USA) Executive Director Craig Pohlemus.

Press-Enterprise, Riverside, CA, Jan. 11, 2008 -- Steven Kandarian, age 30, remains missing after he walked away from his caretaken on Dec. 27, 2007. His mother says that he would be unable to care for himself. It was believed that his behavior would make it easy to spot him, but this has not proved the case. There have been reported sightings but no success in locating him.

MyWestTexas.com, Midland, Texas, Jan. 8, 2008 -- Third grader John Ross Espino, age 9, has been chosen Texas champion for Children's Miracle Network. Born prematurely weighing 17 ounces and then diagnosed with Prader-Willi syndrome, he has overcome many odds. Children's Miracle Network Director Rachel Shintani-Dobbs said having someone like John Ross as a spokesman is invaluable. "He can tell his own story, in his own words in such a heartfelt manner."

St. Petersburg Times, St. Petersburg, FL, Dec. 25, 2007 -- Georgianna Volkman, 44, who has PWS, was delighted to receive her previously delapidated adult tricycle just in time for Christmas after a high school vocational class took on the project of repairing it. Her mom, Judy Volkman, had not been able to find anyone to do the work until the high school seniors did a complete makeover on the trike, asking her only for the cost of parts.

ParamusPost.com, New Jersey, Dec. 28, 2007 -- Prader-Willi syndrome is not the focus of this very interesting article on the relation between biology and behavior, and genes and traits, but it does get a mention in a reference to genetic causes of obesity.

NBCSanDiego.com - Nov. 21, 2007 -Brian Brandt, 5'5" tall, aged 37, weight 132 pounds, was found by San Diego police after being missing overnight. He has PWS and needs daily medication. No information was provided about where he was during the hours he was being sought.

Monday, Nov. 19, 2007 - An article in the Nutrition Section of the New York Times discussed holiday "pigging out" and whether it is a harmless indulgence or a real health risk. Prader-Willi syndrome was mentioned among those who could be at risk for gastric rupture from overeating, a condition likely to be limited to persons with severe eating disorders.

San Jose Mercury News, Nov. 10, 2007 - Elvis Costello and Clover performed at two sold-out shows at $100 a ticket in San Francisco to benefit the Richard de Lone Special Housing Fund. The non-profit agency was founded by Austin and Lesley de Lone in honor of their son, aged 9, who has PWS.

Fulton Valley News, New York, Sept. 29, 2007 - Four members of the Wells and McDougall families will be running in a team relay marathon next month in order to raise awareness of Prader-Willi syndrome, which five-year-old Noelle McDougall has been diagnosed with. The runners include Noelle's mother, two aunts, and her grandmother.

WTKR Your News Channel 3, Norfolk, VA, Aug. 31, 2007 - The Rock and Roll Half Marathon will have several fathers pushing their children while they run. One is Dr. Trey White, a dentist whose 2-year-old daughter Katie has PWS. They have raised over $7,000 for the Hoyt Foundation, a charity which helps people with disabilities be included in all parts of life.

Evansville Courier & Press, Evansville, IN, Sept. 3, 2007 - Mickey Phernetton, aged 10, who has PWS, is looking forward to the fourth "Music for Mickey" benefit concert. Country music singers, headed by the Hometown News (NOTE: they also performed for the 2005 gala banquet at the national conference in Orlando), will perform Sept. 15 at an event which has grown each year. Proceeds will go to research and to build a local Prader-Willi group home.

MetroWest Daily News, Framingham, MA, Aug. 30, 2007 -- Advocates, the third largest provider of care for people with Prader-Willi syndrome in the USA, recently purchased a five-bedroom ranch in Framingham where they plan to house people with Prader-Willi. Neighbors plan to fight against it, not because they object to Prader-Willi syndrome but because they fear the possibility of change of use, as happened before in another home opened in 1986 for residents with PWS. Use was changed from PWS to youth with psychological or emotional disabilities, and a later resident under this use committed a murder.

Channel KHNL, Lanikai, and the Honolulu Star Bulletin, Aug. 4, 2007 -- Both reported on the successful search for Julius Barmettler, aged 11, from Switzerland, who was visiting Hawaii with his family. Tips from the public helped Honolulu police locate him around 11:00 p.m. after he had wandered off that morning, probably, according to his mother, looking for food and adventure. From the various sightings reported, it appeared that he had indeed had an adventurous day, traveling around by bus.

March 2005 -- The BBC (British Broadcasting Company) produced an excellent one-hour documentary on PWS entitled "It is not my fault I'm fat!" It aired in several time frames on the Discovery Channel in the U.S. and may have been the springboard to other media interest.

April 2005 -- 20/20 devoted a segment to PWS, "Rare Disorder Causes Endless Hunger", featuring Maribel Rivera, 24, of California, and Kate Kane, 23, from Maryland. Dr. Dan Driscoll, who is on our Scientific Advisory Board and also chairs our Clinical Advisory Board, was interviewed, too.

The segment was also played in January 2006 on at least one Delta Airlines flight.

Angela Krambeer, mom to Ryan, 5, and Dylan, 3, with PWS, gave a presentation to the local hospital about PWS and then worte an article for the May/June 2005 issue of a local woman's publication, the McHenry County Woman, which has an estimated readership of 75,000 people.

Becky Loupe and son Austin, 9 months, were pictured on the front page of their local paper in Lockport, LA.

Jennifer Christiansen, 15, Washington, appeared on a segment of ABC's Insider in November, 2005, as did Maribel Rivera, California, in June.

Payton Smallwood, 7, Illinois, was featured in a newspaper article about the benefit Music Fest that was being held for her.

Andy Maurer, 46, South Carolina, is fast becoming the ultimate PWS celebrity. After People Magazine published an article about him in their September 5, 2005, edition, the local NBC news affiliate TV station did a feature on him, PWS and his beloved horseback riding. He was also interviewed by CNN for the Paula Zahn Show.

On Q, a Pittsburgh PBS show, featured Rana Awwad, 13, from Saudi Arabia, who has been a patient at the Children's Institute. Dr. Jeanne Hanchett was also a part of the program, explaining PWS.

Ginny McMahon, Virginia, daughter of Gibson and Aris McMahon, at only 8 months old starred with her story and picture in the magazine CARING, National Association for Home Care & Hospice.

Pam Keddie, 38, New York, was written up in a newspaper article about her weight loss of a couple hundred pounds, successful residential placement, and participation in Special Olympics. .

Trevor Ryan, 15, California, was mentioned in a Los Angeles newspaper article about an acquaintance of his, Ronnie Raffaniello, 16. To earn the coveted Gold Award, the highest rank in Girl Scouts, she had taken on the task of raising awareness about Prader-Willi syndrome.

Money magazine featured the Jeff Porter family and their daughter, Abby, who has PWS.

CSI Las Vegas, without consulting PWSA(USA), had a story line about a young man with PWS who died of overeating. Some emails from those who saw it indicated that while it did briefly show extremes, they felt on the whole it was well done.

The Dr. Phil Show featured a family not known to PWSA(USA), but afterwards referred her for education and support.

Nina Roberto, mother of Sonny, age 4, has really been busy. Here's what she says she has been doing in 2006!

Dawn Romine, parent of young Julianna, in Columbus, OH area, sent the PWS Awareness Week proclamation request to the 15 cities/towns/municipalities in Fairfield County. She secured 4 Proclamation declarations. Dawn said there should be a story in the local paper, the Lancaster Eagle Gazette. She is also working to place a story with one of the main media TV outlet news programs, the NBC affiliate, about PWS to occur during PWS Awareness Week.

Bill Vucci, Washington, D.C. reports that CBS News (Channel 9) did a Special Edition Report on Feb. 1, 2006, which featured both his daughters, Angela Maria, and Maria Christine, who has PWS. The sport edition is a human interest story on special needs children using hippotherapy for development gains. Angela rides for fun while Maria rides for therapy.

Jennifer Bolander reports the following: For those of you in the WKYC Channel 3 (Cleveland, Akron?) viewing area...My husband and I were interviewed by Monica Robins, Health Reporter for Channel 3. She has put together a segment on Prader-Willi Syndrome. She also was able to interview the family of a 21-year-old young woman with the syndrome. Our half of the segment is scheduled to air on Monday, Feb 13 at
6 p.m., and the other half with the young woman will air at 7 p.m. I believe my husband and I, and our daughters Kate and Sophie (2, PWS) were able to show a positive, rational, non-sensationalized view of life with the syndrome...I hope this will build awareness.

In March 2006 the Deseret Morning News, Salt Lake City, Utah, carried a feature story on 2-year-old Kate Thornton, daughter of Lisa Thornton, Utah chapter president.

June 22, 2006 -- Toronto Star, Canada did a feature on Christopher Beddoe, age 26.

June 16, 2006, The Billings Outpost, Billings, Montana -- Obituary on Kay Carol Richards, who was presumed dead at birth, diagnosed with Prader-Willi syndrome at age 16, and died at age 49 on June 4, 2006.

May 23, 2006, Statesman Journal, Salem, Oregon ran a story on Gabe Jordan, age 7.

June 21, 2006, Kansas City infoZine, Kansas City, Missouri -- The University of Kansas and Children's Mercy Hospital are jointly forming a research center to combat obesity. The new Center for Physical Activity, Nutrition and Weight Management will be headed by Kansas University Professor Joe Donnelly, who is a member of the PWSA(USA) Scientific Advisory Board.

A story was carried in the Akron, Ohio, Beacon Journal, on "Tina", a woman with PWS.

The Lorain Morning Journal in Ohio featured a story on disabled bowlers which included a mention of Alec Jones, 13, who has PWS>

Lisa Thornton, president of the utah chapter, did a commercial about PWS, along with the governor's wife!

"Jewish Action"--the magazine of the Orthodox Union--has an article about adoption which features our family, writes Yael Putney. The article mentions that Naomi Sarah and Ahuva Dina have PWS and gives a little description of PWS. The description is ALMOST what I told the author of the article! It is a very upbeat article, so I thought if you can get a copy, you might want to include it in your publications list.

Pioneer Press Online, Glenview,IL,USA, featured a story about how Ruth Chausow and her husband worked tirelessly to get Prader-Willi Syndrome properly diagnosed and codified into law for special education funding eligibility.

Bloomington, IL, Pantagraph, March 2006 -- Brian Weakly, 31, who has PWS, wants to move out of his parents' home again and into a group home. He wants to interact with other people, he wants to work again, and he wants to give his parents a break.

May 6, 2006 -- News releases came out today, announcing that NIH is launching clinical studies nationwide to study rare diseases. The three that are being focused on initially are Prader-Willi syndrome, Rett, and Angelman syndrome. "More than 20 studies are expected to open in the next few months at about 50 sites across the United States and in several other countries including the United Kingdom, Japan, and Brazil."

May 2006 -- The local newspaper in Grantsville, MD, The Republican, published a full page feature story about Georgie Varndell, 23 months, and PWS with 3 color photos - one on the front page. Lisa spoke to a group of RNs from the Healthy Families program, serving children birth to 5, to give them information and resources to help identify children with PWS.

Local radio stations ran public service announcements. The Varndells circulated an email titled "Georgie's Story" to family and friends asking them to forward it on. As part of a Sibling Care Workshop, Lisa provided PWS bracelets to all participants along with discussion of the challenges faced by PWS youth. The Varndells have distributed over 200 of the bracelets and a case of 2006 calendars to area residents. Lisa, along with Georgie's pediatrician, B. Alan Haworth, and Yvonne McConnell, Program Coordinator for the local Infants & Toddlers Program, will make a presentation at Grand Rounds of Garrett County Memorial Hospital in June. The presentation is designed to promote awareness of the new generation of PWS to local doctors and stress the importance of early diagnosis, referrals and early intervention services.

In the Fall, Lisa will be conducting a workshop at a county school staff development day to inform school personnel about the potential issues facing school age PWS children.

May 2006 -- The lancaster eagle-gazette, lancaster, oh, told the story of Julianna romine, aged 2, with much information about prader-willi syndrome.

Her mom, Dawn Romine, recorded a 15-minute radio interview to air May 4. She also was presented a proclamation by the Pickerington City Council.

May 3, 2006 -- Past board member, Stewart Maurer, reported that he was watching the Atlanta Braves on TV last night. They were playing the Rockies and the announcer, Jeff Tolbert, had a full two minutes on the syndrome and on the association. It was also on the score board and scrolling across the screen.

May 2006 -- A new public service announcement with Clint Hurdle, manager of the Colorado Rockies baseball team and father to a 3-year-old daughter, Madison, who has PWS, is available for viewing on the PWSA (USA) Web site home page, www.pwsausa.org.

May 2006 -- Announced in the Baltimore Sun was the awareness relay being sponsored by the Prader-Willi Syndrome Association of Maryland, Virginia and DC. This is the Third Annual Prader-Willi Syndrome Awareness Relay.

May 2006 -- Channel 2 in Buffalo, NY, did a story on PWS, featuring Jessika Dickinson, the granddaughter of Barb McManus, former board member and current Office Technology person for PWSA(USA).

May 2006 -- It was announced to all our e-groups that there was a feature on CNN on the Paula Zahn Show at 8pm EST on May 26^th about PWS. Some of you may be familiar with the documentary, “Maribel,” that was filmed by the sister of Maribel who has PWS. This is the same documentary that will be aired on this show, but with a few new updates on Maribel’s progress. “Maribel” will also be shown again nationally on June 4^th in its entirety on SI'TV's "Not-So-Foreign Filmmakers Showcase" at 8.pm. (with re-plays on Friday June 9th at 7:00 p.m. and Saturday June 10th at 9 p.m.). SI'TV is a new English speaking Hispanic Network.

May 2006 -- Commercialappeal.com, a subscription service in Memphis, TN, featured Kyle Vloedman, 11, in its story on PWS. His story and information about Prader-Willi syndrome were also in the Statesman Journal June 11, 2006.

June 2006, press release -- Eastern Hills Sunrise Rotary Club of Clarence, New York, donated $10,000 to the Prader-Willi Syndrome Association (USA). The Club raised funds through its 2006 annual Monte Carlo night and annual Golf Tournament. Rotary Club president Scott Bylewski presented the check to Barbara McManus, conference chair for the 28th National PWSA(USA) conference and the 16th PraderWilli Allilance of New York, Inc. conference, and Jeannie Dickinson, PWSA youth program director.

Dec. 17, 2006 - Elyria, Ohio, The Chronicle -- When Alex Jones, age 13 with PWS, realized after a year of trying that for several reasons he couldn't ride his shiny red Kent X-Power bike, he immediately said that he wanted to donate it to "the toys for kids that don't have any." Alec's father had hoped that Alec would be able to learn to ride it, but in the end he was happy with his son's unselfish decision.