In The News
The San Diego SUDC Research Project Finds New Home at Children's Hospital Boston - Thursday, July 19, 2012

HACKENSACK, NJ - July 18, 2012

For Immediate Release
Contact: Laura Crandall
Laura@sudc.org
917-273-2733

The San Diego SUDC Research Project Finds New Home at Children's Hospital Boston

Founded in 2001 under the direction of Dr Henry Krous of Rady Children's Hospital-San Diego, the San Diego SUDC Research Project has created the first worldwide database into Sudden Unexplained Death In Childhood (SUDC). The project to date has evaluated more than 160 children who have succumbed. With the brave participation of bereaved parents, as well as the Medical Examiners and Coroners who investigated their deaths, vital information has been gathered and analyzed and helped create 10 peer reviewed journal articles to improve our understanding of these rare tragedies.

The SUDC Program, a centralized resource for SUDC information, advocacy, support and fundraising for SUDC, is grateful for the vision and commitment of Dr Krous and his team of co-investigator's. Dr Krous spearheaded the SUDC Research Project for eleven years and retired last month. In appreciation, the SUDC Program honored Dr Krous with the 2012 SUDC Star of the Decade Award.

This month, The SUDC program is excited to announce the transition of the SUDC Research Project to its new home at Boston Children's Hospital under the direction of Dr Hannah Kinney. Dr Kinney has worked with the SUDC research project since its creation as the project's first pediatric neuropathologist, performing crucial reviews of the brains of children who died of SUDC which have led to the discovery of hippocampal and temporal lobe abnormalities in a subset of SUDC cases.

Dr Kinney holds several appointments, including Professor of Pathology in the Department of Pathology at Harvard Medical School, and Neuropathologist in the Department of Pathology at Boston Children's Hospital. Her commitment to the research of sudden death as it relates to Sudden Infant Death Syndrome (SIDS) is vast and unparalleled. She is a pioneer and her vital work spans decades, including the creation with Dr. James Filiano of the triple risk model in SIDS, and multiple datasets with committed colleagues, including in the San Diego medical examiner's system, that have reported abnormalities in brainstem neurotransmitter systems in infants of SIDS in regions related to cardiorespiratory control.

With the SUDC Research Project's move to Boston, it also expands under the direction of Dr Kinney, and creates the International SUDC Research Initiative. Expert collaborators to the research team from the U.S and Australia already comprise this growing network of researchers dedicated to the improved understanding SUDC which will lead to its prevention.

"With the SUDC Research project's transition to Boston Children's Hospital we look to accelerate research by building on the momentum of our first eleven years and accomplish even more in the next" said Laura Crandall, Co-founder and Program Director of the SUDC Program whose daughter, Maria, died of SUDC in 1997. "Our greatest hope and goal is that someday soon we can guarantee that no other families will ever know the pain of losing a child from SUDC."

For more information on SUDC and how to make a donation to the program,
please visit www.SUDC.org or call 800-620-SUDC.


 
Levi Collom's legacy lives on - Friday, May 25, 2012
CAPE GIRARDEAU, MO (KFVS) -

One afternoon he's playing, hours later he's gone.

As Levi Collom's family tries to cope with his sudden, still unexplained death, they work to keep his spirit alive.

They hope to raise $100,000 at least.

There's a big fund raiser planned tomorrow night in Sikeston, that's when the exhibit for the Discovery Playhouse will be unveiled, right now it's a big secret!

 read more ...
Clare's Run For A Reason raises money, awareness for SUDC - Tuesday, May 22, 2012
 

I'll never forget meeting with Sarah Whitenack, a Raleigh mom who lost her daughter Clare at 19 months to Sudden Unexplained Death in Childhood. I wrote about Whitenack and her family's experience last June as she organized the first Clare's Run for a Reason.
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Family hopes to spread word about SUDC - Monday, May 21, 2012
Family hopes to spread word about SUDC
By Leonna Heuring
Sikeston Standard Democrat

BENTON, MO --
BENTON -- On the morning of March 17, Levi Collom woke up at his home in Benton with a slight fever of around 100 degrees.

"We treated him with Tylenol and Motrin, and he started feeling better," said the 3-1/2-year-old's mother, Ellie Collom.

Levi; his mother; his father, Glenn Collom; and his big sister, Victoria Collom, went to Chick-Fil-A in Cape Girardeau for lunch.

"We ate, and he played in their indoor playground for two hours," Mrs. Collom said. "He had the biggest time."

The family stayed, and the parents watched as their children played, Mrs. Collom said.

"We left and went home, and actually my daughter and I left the house. Glenn was there with Levi, and he was playing in the back yard." Mrs. Collom recalled.

Levi was put down for a nap.

 
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Kerrigan's Run For A Reason - Tuesday, April 24, 2012

Following unexplained death of 4-year-old, family plans July fundraiser in her name

On Thanksgiving Day 2010, 4-year-old Kerrigan Richardson did not wake up.
“Our lives were forever changed,” wrote her parents, Brandon and Angela (Foulger) Richardson. “To this day, the cause of her death is still unknown.”

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Kerrigan's Run For A Reason - Tuesday, April 24, 2012

Following unexplained death of 4-year-old, family plans July fundraiser in her name

On Thanksgiving Day 2010, 4-year-old Kerrigan Richardson did not wake up.
“Our lives were forever changed,” wrote her parents, Brandon and Angela (Foulger) Richardson. “To this day, the cause of her death is still unknown.”

 read more ...
Paul's the king of the sea on a surf ski - Tuesday, April 24, 2012
Australia-East Gippsland News-
 
 Toasted vegetable sandwiches and homemade sports drink formula powered Lakes Entrance’s Paul King to paddle 160 kilometres in 19 hours last week.

The survivor of a horrific surf accident, Paul set it upon himself to paddle the entire length of the 90 Mile Beach, starting at Port Albert and finishing at the Red Bluff, in Lake Tyers.
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Yoga Immersion to Benefit SUDC! - Thursday, April 19, 2012
On Saturday May 5th, Enjoy a day full of yoga at East High School and help support grieving families and funding crucial medical research so that no new families will have to endure the pain of losing a child. If these things appeal to you, our SUDC (Sudden Unexplained Death in Children) Yoga Fitness Immersion event is right for you! read more ...
A Day of Music for Casey Brings Awareness of SUDC to Park Slope - Wednesday, April 18, 2012
It is every parent’s nightmare.

“On the morning of June 3rd, Casey (21 months) had woken up with a slight fever. She had not slept well the night before but as the day wore on, she was feeling better, eating a small lunch and spending some time playing with her grandpa,” says Ellen Young, Casey’s mom, lifelong Park Slope resident and founder of The Casey Young Foundation. “As she went down for her nap, she sat in her crib, cuddled her elephant, looked at me and said ‘night-night’ and put her head down as always. ‘Love you, sweet dreams,’ I replied as always. Casey never woke up from that nap.”
 
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Casey Young Foundation Announces First Official Fundraiser: “A Day Of Music For Casey” - Wednesday, April 04, 2012
PRESS RELEASE
Release Date: 2012-04-04
Category: Society

“A Day of Music for Casey,” a benefit for The SUDC organization, Sudden Unexplained Death in Children, will be held Sunday, April 29, at Congregation Beth Elohim in Park Slope, Brooklyn. The Casey Young Foundation honors the life of Casey Young, the beautiful daughter of Ellen and Jonathan Young, who passed away suddenly and unexpectedly at the age of 21 months.

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Bed-Sharing, Smoking Play Role in Sudden Infant Death - Monday, March 26, 2012
Bed-Sharing, Smoking Play Role in Sudden Infant Death
Tummy sleeping still top cause, but other risk factors are culprits, too, research showsMarch 26, 2012

MONDAY, March 26 (HealthDay News) -- Although the rate of Sudden Infant Death Syndrome (SIDS) dropped by more than 50 percent following the start of a U.S. campaign encouraging parents to put babies to sleep on their backs, new research suggests that risk factors other than "tummy sleeping" may explain why SIDS rates have not declined further.
 
By Lisa Esposito
HealthDay Reporter
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Local Woman Delivers Own Baby - Monday, March 26, 2012

UPDATE: The Gintz's lost their 14-month-old little girl, Lyla, last year. Amanda found her early in the morning after Jason had gone to work. It was the same emergency crew that came out a year ago when Lyla died that came to help Amanda bring Lane into the world. Jason thinks it is not coincidence that Lane was born in the same place that his older sister died. 'God works in mysterious ways...we asked for a miracle, and here he is.'  read more ...
The Sudden Unexplained Death in Childhood (SUDC) Program Hosts Starlight Cruise on the Hudson River - Monday, March 19, 2012

The Sudden Unexplained Death in Childhood (SUDC) Program Hosts Starlight Cruise on the Hudson River -- SUDC Starlight Cruise on the Hudson between New York City and New Jersey is Saturday, April 14, 2012

The Sudden Unexplained Death in Childhood (SUDC) Program is hosting its SUDC Starlight Cruise on the Hudson River between New York City and New Jersey on Saturday, April 14, 2012 to bring together dedicated researchers, families affected by SUDC and friends of the program to call attention to this cause and highlight the program's successes in educating the public about SUDC and advocate for further research.

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Racer's Regulars Raise Funds With Chili Cook-Offi - Tuesday, February 14, 2012
  • By Nick Gestido
  •  

    Fourteen amateur chili cooks (yours truly included) entered — only one came away the winner, but that's hardly the point.

    Saturday marked the twelfth annual Racer's Cafe Chili Cook-Off, and the bar was packed to raise money for the family of Andrew Alton Dowley, who passed away at 2-years-old as a result of Sudden Unexplained Death in Children, a little-understood disease.

     
    Research Opportunity!To Hold or Not To Hold - Tuesday, December 13, 2011
    Creating Guidelines for Management of Unexplained Child Death-

    Bereaved parents, grandparents, step-parents and guardians of sudden and unexpected infant and childhood deaths are invited to participate in this online survey that takes about 20 minutes. Share your experience and provide your comments to help create the first national guidelines in this area.

    Thank you in advance!
     read more ...
    Alex's Run For A Reason Raises 25K for The SUDC Program! - Friday, October 28, 2011
    Alex’s Run for a Reason raises $25K for SUDC Program
    By David Weingrad, dweingrad@liherald.com
    Nearly 400 people came to Newbridge Road Park in Bellmore on Oct. 23 to take part in the fifth annual Alex’s Run for a Reason Family Run/Walk.
     read more ...
    Grand Ledge parents to honor daughter who died a mysterious death during a nap - Friday, August 26, 2011
    Written by Barb Modrack. Lansing State Journal
    GRAND LEDGE - When Grand Ledge toddler Ariana Lusis died suddenly during a nap on Nov. 30, 2010, her parents were left with shock, grief and unanswered questions.
     
     
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    Marshfield parents honor late daughter by starting foundation. - Monday, August 01, 2011
    By Patrick Ronan

    MARSHFIELD —
    March 1, 2010, began like any other day for Scott and Danielle Hitchcock. The Marshfield couple put their 2-year-old daughter, Emerson Lily Hitchcock, in her crib for an afternoon nap. Two hours later, Scott and Danielle, who at the time was 12 weeks pregnant with their fourth daughter, Avery, discovered that Emerson was unresponsive and not breathing. 
     read more ...
    'I felt numb – we'd lost our little boy' - Monday, August 01, 2011
    As told to Dina Behrman
    The Guardian

    In the morning, Gregor was a normal, healthy two-year-old. By the afternoon, he was dead. His mother, Linda Sterry, talks about the sudden loss of a child – and the added trauma of having to deal with police questioning.
     read more ...
    Run Honors East Bay Toddler... - Tuesday, July 05, 2011
    By Marika Krause

    An East Bay toddler passed away in her sleep and 11 years later doctors still are no closer to finding the cause. She was diagnosed with Sudden Unexplained Death in Childhood, a rare disorder similar to SIDS. NBC Bay Area's Vicky Nguyen sits down with her mother who's also started an annual race in Orinda to raise awareness and funding.

     read more ...
    Cooper's Lasting Legacy - Wednesday, June 15, 2011
    By Lucy Nash

    Many people are familiar with the term SIDS or Sudden Infant Death Syndrome.

    You might have been touched by it personally, know someone who has or even just donated a couple of dollars to SIDS and Kids for one of those funny red noses.

    But have you heard of SUDC?

    Swan Reach couple, Robert and Kylie Trewin knew nothing of the acronym until the sudden death of their 16 month old son Cooper.

     read more ...
    Event To Build Awareness for SUDC - Monday, June 06, 2011
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    Lacing Up to Preserve Their Daughter's Legacy - Friday, May 27, 2011
    By Jennifer Seelig

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    Event Funds SUDC Research-Tommy's Run For A Reason, Sterling, VA - Thursday, May 05, 2011

    Five hundred people are expected to gather at Algonkian Park on Saturday morning to run or walk at the 3rd Annual Tommy’s Run for a Reason. After the race, the park will be alive with families enjoying festivities such as pony rides, face painting, games, eating a catered BBQ lunch by Carolina Brothers and even to get a peak at the Sterling Fire Department’s fire truck. 

    The event celebrates the life of and commemorates the loss of a healthy, thriving 2-year-old boy, Tommy Marshall, who unexpectedly passed away on May 11, 2008.

     read more ...
    Cake Competition Means More to A SUDC Mom... - Tuesday, April 05, 2011
    Sarah Hardin: Cake designer and decorator.  By Janet Sudnik/Photo by Robert Sutton/Published by Tuscaloosanews.com
    The fringed tips of Sarah Hardin's piecy blond hair could have been iced with the same hotpink frosting that accents the three-tiered cake she's just finished decorating. The lime-green, polka-dotted,pink-bowed confection is a sugar and flour expression of Hardin's personality — bright, funky and fun. She bakes and decorates fanciful cakes and cupcakes at It Takes The Cake in Northport, and her talents have just landed her a spot on a Food Network Challenge competition.
     read more ...
    Backing a Charity Benefits Others—and Yourself, by Kristy Kennedy - Monday, February 14, 2011

    Wishing for spring, I pulled out some of my floral candles this week and came across a special one with a sweet pea scent.

    It reminds me of dear friends, Rob and Diane Burda, who gave us one as a gift. It was a thank-you for working on a charity that we all care deeply about not only because it is a worthy cause but also because it honors their son, Joshua.

     read more ...
    Pinning Down A Cure to Spare Others - Tuesday, January 11, 2011
    The unexpected death of a Baltimore family’s 2-½-year-old son inspired them to raise money for and increase awareness of the Sudden Unexplained Death in Childhood Program. By Maya T. Prabhu  read more ...
    TN Lawsuit Ends with Groundbreaking Ruling - Thursday, November 11, 2010
    A groundbreaking ruling in Tennessee last week is shedding a spotlight on the treatment of families and the death investigation process when a child dies unexpectedly.

    The Sinclair family's youngest child, Tyler, died without explanation in June of 2008. The article featured below shares the story of why the Sinclair's pursued a lawsuit against Forensic Medical Management Services, PLC. They now are moving forward to advocate for a new law in Tennessee--Tyler's Law--to help families going forward.
     
    Lawsuit Victory Could Pave Way For New State Law
     
    by Brent Frazier-featured on News Channel 5
    Balancing the needs of an investigation and the sensitive care of families is possible. Last year I co-authored an article on this topic with Dr. Andrew Baker which was published in the journal Forensic Science, Medicine and Pathology titled, "To Hold Or Not To Hold". You can also obtain the published article by visiting SpringerLink.  
     
    We must continue our advocacy efforts through The SUDC Program; and we will. The tragedy of losing a child is horrific enough without any additional layers.  I am confident that we can improve the system by working with the professionals involved. 

    Thank you to our advisory board members who continue to be a vital source of expertise and perspective that guide the program to meet our goals and help our families. I commend the Sinclair family for their courage in the wake of life's greatest tragedy.

    In peace,

    Laura Crandall, Program Director

     
     
     
    Group to lobby for child autopsy law. - Tuesday, November 09, 2010
    When Don and Sarah Sinclair's 18-month-old son, Tyler, died suddenly while napping at a baby sitter's house, the medical examiner's investigator would not let the couple see their son.
     
    A doctor and nurse at Southern Hills Medical Center, where the boy was taken in 2008, testified in Davidson County Circuit Court that they had tried to reason with the investigator, Sherrie Saint, but she threatened to have them arrested for interfering with her work.
     

    A jury awarded the Nashville couple $300,000 in compensatory damages and $1.25 million in punitive damages against Forensic Medical Management Services PLC. The company contracts with Metro government to handle its 1,600 or so autopsies each year.

    The six-man, six-woman jury attached a note to the verdict indicating the reason for the punitive damages: to "ensure that this injustice does not happen again."

    Now, four of the 12 jurors; the Sinclairs; and their legal team, Charles Robert Bone, John Branham and David Briley, plan to lobby lawmakers in January to pass "Tyler's Law," which would give parents of a deceased child the right to see the body before it is taken for autopsy. No such law exists in Tennessee, although court testimony revealed that some states have such a mandate.

     read more ...
    Alexander's Run has overwhelming success with inaugural run in TrentonAlexander's Run has overwhelming success with inaugural run in Trenton - Monday, November 08, 2010
    Researchers are working to identify the cause(s) and risk(s) of SUDC. But until a day when no family experiences this tragic loss, the SUDC program will continue to raise funds for research, aid in the creation of state and national legislation to further SUDC investigations, and provide programs and services for SUDC families across the country.  read more ...
    Running for a Reason –– Alex –– at Newbridge Park - Friday, October 29, 2010
    By David Weingrad-The fourth annual Alex’s Run For a Reason fundraiser took place this past Saturday at Newbridge Road Park in Bellmore to great success.  About 500 people turned out to take part in the day’s activities, and the event raised more than $26,000.
     read more ...
    Loudon County beats Park View, 19-7, in Touchdowns For Tommy Charity Football Alumni Game - Thursday, October 28, 2010

    After a month of postponements due to weather, the second annual Touchdowns for Tommy charity football alumni game was held last week with Loudoun County defeating Park View, 19-7, to avenge a 21-19 last-minute loss in the 2009 contest.
     read more ...
    Newton firefighter, family host fundraiser for research after son’s unexplained death.Newton firefighter, family host fundraiser for research after son’s unexplained death. - Wednesday, September 15, 2010

    It will be a night to celebrate the life of Ryan Mancini.

    But at the same time, Amy, Ryan’s mother, wants to raise awareness about Sudden Unexplained Death in Childhood — the mysterious condition that took her 20-month-old son away from her.

    On Saturday, Sept. 18, Amy, her family and a host of supporters will hold a fundraiser at the Newton Marriott, “Remembering Ryan,” from 6 p.m.-midnight, to highlight the life of Ryan.

     read more ...
    Families Urge Congress to Pass the Stillbirth and SUID Prevention, Education and Awareness ActFamilies Urge Congress to Pass the Stillbirth and SUID Prevention, Education and Awareness Act - Tuesday, June 08, 2010
    On May 18th, over 30 family members and over 15 supporting organizations showed their support of the Stillbirth and SUID Prevention, Education and Awareness Act by travelling to Washington and participating in a Congressional Educational Breakfast and attending over 40 Congressional visits to urge their Congressman and Senators to sign on as co-sponsors of this crucial legislation.
     read more ...
    Congress urged to pass the Stillbirth and SUID Education and Awareness Act - Wednesday, May 19, 2010

    "We're not using what our lost babies can teach us to help avoid this happening to someone else,'' Laura Crandall, whose daughter, Maria, died in her crib of unexplained causes at 15 months of age, told a forum held for congressional staff Tuesday.

     read more ...
    SUDC Program Director Laura Crandall on the Imus Radiothon - Friday, May 07, 2010
    View Laura Crandall's segment on the Imus Radiothon.  read more ...
    SUDC Program Director to appear on Imus Radiothon on Friday May 7th - Thursday, May 06, 2010

    Program Director Laura Crandall is scheduled to appear on the Imus Radiothon on Friday, May 7th between 8:00-9:00 a.m. (EST). 

    The IMUS Radiothon to benefit the Imus Ranch for Kids with Cancer, the Tomorrows Children's Fund, and the CJ Foundation for SIDS on 77 WABC Radio began LIVE this morning, May 6th at 5:30 a.m. and wraps up on Friday, May 7 at 10 a.m. The Radiothon can also be seen on Fox Business Channel from 6 to 9 a.m. and also live on the internet at http://live.foxbusiness.com/fblive.

    The Radiothon is now in its 21st year. Please tune in!

     
    NBC Nightly News Spotlight-Low serotonin levels linked to SIDS - Wednesday, February 03, 2010

    Visit msnbc.com for breaking news, world news, and news about the economy

     
    Low Seretonin Production A Likely Cause For SIDS - Tuesday, February 02, 2010
    FOR IMMEDIATE RELEASE

    February 2, 2010 Hackensack, New Jersey –
    Statement of the SUDC Program concerning the article published in the Feb. 3 issue of The Journal of the American Medical Association entitled: “Brainstem Serotonergic Deficiency in Sudden Infant Death Syndrome” by Kinney et al.  read more ...
    New SUDC Research Published - Tuesday, October 20, 2009
    The medical journal, Pediatric Development and Pathology has published an article entitled Sudden Death, Febrile Seizures, and Hippocampal and Temporal Lobe Maldevelopment in Toddlers: A New Entity.
     
    In addition, The SUDC Program's Medical/Investigational Advisory board also released a statement to provide further education.
     read more ...
    Gene Tests Rate Sudden Cardiac Death Risk - Wednesday, September 30, 2009
    (CBS)  New genetic studies are being made available to doctors and patients every day.

    To kick off [the] "Early Show" series, "What's in Your Genes?" CBS News medical correspondent Dr. Jennifer Ashton took a look at some of the genetic advances being made -- and the medical battles that are being won... read more ...
    Couple use running to cope with grief - Monday, September 28, 2009
    The 34th annual YMCA Johnstown Marathon will take place on Oct. 4 despite financial setbacks. The race was almost canceled this year due to a loss of funding from major sponsors.  The YMCA was in the process of finding sponsors for the event when it was contacted by David Orosz, a Johnstown native, to see if there was anything he could do to help the marathon take place this year.  Orosz and his wife, Ginny, used marathon running as an outlet for their grief after their 15-month-old daughter, Jordann, died of SUDC in 2002.  read more ...
    Channeling sorrow. Loss of daughter spurs parents to action. - Friday, August 14, 2009
    SUDC parents Robert and Dianne Lowe share the heartbreaking story of the loss of their precious daughter Chelsea Rose and how they have responded to the "call to action" to support The Stillbirth and SUID Prevention, Education, and Awareness Act! read more ...
    Program will help probe unexplained infant deaths - Friday, August 14, 2009
    Through the Sudden Unexpected Infant Death (SUID) Case Registry pilot project, the CDC will compile comprehensive data on infant deaths in New Jersey and four other states, including autopsy results, medical records and information from death scene investigations that can highlight environmental factors that may have played a role. read more ...
    Twin Cities Live features SUDC - Thursday, August 06, 2009
    Sheila and Mike Trymucha are featured on Twin Cities Live in a moving segment including an interview with Dr. Henry Krous.  *Note you will need to scroll down to the 4th video and then click to play. read more ...
    US Legislation Introduced Benefits SUDC! - Tuesday, July 14, 2009
    WASHINGTON, DC - Senator Frank R. Lautenberg (D-NJ) and Congressman Frank Pallone, Jr. (D-NJ-6) today introduced a bill to help reduce the number of unexpected infant deaths in America by calling for new research and education on stillbirths and Sudden Unexpected Infant Death (SUID). 
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    Doc's Promise Fulfilled-CBS News Early Show - Friday, June 05, 2009
    KAAL TV - Monday, August 04, 2008

    Coon Rapids couple look for answers in child's death ~ Seven months ago, Sheila and Mike Trymucha lost their 16-month-old daughter, Lauren to Sudden Unexplained Death in Childhood, or SUDC.

     read more ...
    Good Day NY Morning Show - Friday, February 08, 2008

    Laura Crandall featured on NY morning show after she won Glamour of Your Year 2008 award.  Watch video and

     read more ...
    Glamour Magazine - Friday, February 01, 2008

    Laura Crandall of SUDC Wins Glamour's 2007 Woman of Your Year Award!

     read more ...
    American Academy of Pediatrics - Monday, January 01, 2007

    "No easy answers. Program provides support to families touched by Sudden Unexplained Death in Childhood"

     read more ...
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