Newsletter

August 22, 2007
Summer 2007: Sharing the Journey - The 2007 Conference Wrap up & Roundtable

Boston Conference Wrap-Up by Jane True
Hands Across the Water by Jane True
IDEAS Cheers our Volunteers: Mary & Joan Ronan
Farewell to a Friend: Kevin Chamberlain
Research Roundtable by Nicole Cleary
Sharing the Journey: Baby Steps by Jack & Gina Peters
Facing the Fear of Sudden Death in Dup15q by the Scientific Board
Reflections from a Sibling by Shelbie Johnson
Reflections from the Listserve Online Conference
Fundraising Successes by Frank Kobuszewski

​(parade, roundtable, European families, parent match, translation Mirror, collaboration, store, genotype, phenogype, SUD, GABA, JP, seizures, website, sudden and unexpected death, ADHD, brain tissue donation, autism tissue program, Alexis, sharing, Alison Kalnicki, budget gap, fundraisers, phantom tee, jewelry and candle parties)
 

May 7, 2007
Spring 2007: Travel

Travel and the Child with Dup15q Syndrome by Jane True
Air Travel with a Special Needs Child by Mari O'Connor
From the Research Desk by Carolyn Schanen
IDEAS Cheers Our Volunteers: Sue Burroughs
Vacation Without Kids by Nicole Cleary
Happy Adventures and Traveling to an Out-of-Town Medical Appointment by Alison Kalnicki
Making the Most of a Trip to DisneyWorld by Ashley Eveland
A Tribute to Frederique Davidson by Catherine Jarrold
Reflections from a Grown-Up Little Sister by Elizabeth Bennett
Lindsey: A Gift and a Loving Child by Michell Young
Circle of Friends by Frank Kobuszewski

(canoeing, flying, camping, airplane, bathroom, carry-on, medications, security checkpoints, seizure survey, cookbook, phantom tea, child care, babysitter, planning, routine, comfort toys, health records, insurance coverage, guest assistance pass, memorial, Montreal, brother, sibling rivalry, NICU, La Leche, eye contact, hypotonia, horse back riding, giving, gift)

March 1, 2007
Winter 2007: What is IDEAS?

What is IDEAS? by Jane True
A Road Less Lonely: The History of IDEAS by Jane True
Why I Go to the IDEAS Conference by Sarah Rasmussen
IDEAS Cheers Our Volunteers
Follow the Child by Nicolas Martin
IDEAS Provides New Message Board Forum
Research Update: Researching Interstitial Duplications of Chromosome 15q
IDEAS Moving into the Future by Nicole Cleary
Remembering Clare: the True Meaning of Life by Jodi Miller and other IDEAS families
Thank You
Reflections from a Sibling: Matt Davis
Family Portrait: We are an Italian Family by Camilla
Happy Birthday
Phantom Tea Party

(BigTent, memorial, fundraiser)

October 16, 2006
Fall 2006: Communication

Communication in Chromosome 15q Duplication Syndrome by Jane True
Research Update: Molecular Investigations of Duplications of Chromosome 15 in Autism by Nicole Cleary
IDEAS Cheers Our Vounteers
The Highly Verbal Child with Dup15q by Tracy & Julie Orton
Communication and the Young Adult: Connecting with Rachel by Anne Karch
​Behaviour is Communication by Jodi & Jamie Miller
Happy Birthday
Reflections from a Sibling by David McCoy
Reflections from the ListServe: Communications in Our Kids
Family Portrait: A Military Family by Andy & Cindy Johnson
4th Bi-Annual International IDEAS Conference: Sharing the Journey

(behavior)
 

July 25, 2006
Summer 2006: Medical Care Issues

Medical Care Issues by Jane True
Working with Pediatricians: An Interview with Dr. Mark Myers by Jane True & Dr. Myers
Getting Through Medical Appointments by Ellen Doxtator
Reflections: What do you do to help doctor's appointments go more smoothly? by Jill Kertzman, Doreen Gladis & Mari O'Connor
Growing Up Together - My Big Sister by Tyler True
Our Hope for Targeted Treatments by Nicole Cleary
The Gift of Hope
Family Portraits: Carrie's Story by Darlene Johnson
Happy Birthday
Believe in Our Kids: eBay Auction to Support IDEAS
Paper or Plastic?
Upcoming Regional Gatherings

(reflections, Clare, research, fundraiser)

May 8, 2006
Spring 2006: Behavior Changes in IDIC(15)

Behavior Challenges in idic(15) by Jane True
Creating Order Out of Chaos (Adapted from Rick's Albin's Functional Behavioral Assessments: New Developments)
Lessons from the Classroom: Behavior Support Plans in Action by Michelle Hokenson
Medications Used for Behavior Mangement by James True, MD
Reflections by Deb Case, Jo-Ann DiBiasio, Mari O'Connor, Amy Turner, Samuel Doxtator
​Finding Our Way Through Behavior Changes by Kay Kitzmiller
​Bittersweet Memories
Emma's Story by Paul & Ben Davis

(FBA, BSP, hitting, kicking, pinching, Risperidol, Seroquel, Abilify, Geodon, Zyprexa, Tegretol, Depakote, Elavil, Tofranil, Paxil, Celexa, Lexapro, Luvax, Effexor, Cymbalta, Wellbutrin, Luvox, Clomipramime, Valium, Xanax, Ativan, Tranzene, Buspar, Benadryl, Atarax, Benzodiazepines, Ambien, Sonata, Seroquel, Rozerem, Melatonin, Ritalin, Concerta, Focalin, Dexadrine, Adderal, Strattera, lithiam corbonate, Clonidine, Tenex, family portrait, time out, communication, aggression, massage, screaming, Breauna Edwards)

February 7, 2006
Winter 2006: Caring for the Caregiver

Caring for the Caregiver by Jane True
Managing & Coping with Parental Stress by Nicole Wright, MS
My Experience with Counseling by Julie Saenz
Respite: A Breath of Fresh Air by Alison Kalnicki
I Need Help - and This Time I Really Mean It! by Ellen Doxtator
Maintaining a Social Life by Kathy Wise, Nicole Marmo and Margaret Kelliher-Gibson
​Parent Match Helps Parents Care for Themselves by Kadi Luchsinger
Caring for the Sibling Care Giver by Wendy Harris
Olivia by Pamela Taylor

(stress, support group, exercise, relaxation, support system, family portrait)
 

October 13, 2005
Autumn 2005: Conference Perspectives

2005 Conference Perspectives by Jane True
A First-Time Attendee by Karen Sales
A Grandmother by Brenda "Mamma" Mackay
Through a Sister's Eyes by Sarah Miller
An Outsider Looking In by Laura Cashmore
​A Volunteer's by Danielle Wagner
IDEAS Research Roundtable Explores Links Between Idic(15) and Seizures - Nicole Cleary, MSS
​Families Increase Research Opportunities for Chromosome 15q Duplications
Announcing: The Sunshine Committee, A New Opportunity to be Involved with IDEAS & Our Wonderful Children by Ruth Kross
Cheyenne by Ellen Doxtator

​(family, sibling, sensitivity training, Brenda Finucane, Carolyn Schanen, GABA, Martin J. Gallagher, Diane Chugani, Art Beaudet, Timothy DeLorey, mouse model, brain donation, Beth Malow, insomnia, Coriell, tissue and cell banks, Tina Sellers, birthday, cards, family portrait)
 

July 31, 2005
Summer 2005: Promoting Independence

Promoting Independence by Nicole Cleary
With My Own Spoon: Learning to Eat Independently by Paul and Dawn Rivard
Toilet Training: A Big Step on the Road to Independence by Tom and Sharon Maser
She Wants to Be a Mommy When She Grows Up by Michelle Hokenson
Johanna's Gifts by Diane Creeley
​Creating Our Own Adult Services: Chad's Story by Bruce and Deb Lindgren
​Written Records by Jane True
There's No Place Like Home - Or Is There? by Brenda Finucane
Understanding the Choices for Independent Living by Hazel Yelverton
Family Portraits: Liz Reiter by Christian Reiter and Anette Rohr

(parenting, adulthood, eating, therapy, independence, toileting, sexual maturity, schools, transition, employment, medical, caregiver, routines, residential services, support, Germany)

February 23, 2005
Winter 2005: Growing Up Together - The 2005 Conference & Research Meeting

Growing Up Together: 2005 Family Conference & Research Meeting by Nicole Cleary
Understanding Sensory Processing Disorders by Debra J. Denniger
A Vision of Hope by Mary Anne Ehlert
What is Augmentative and Alternative Communication? by Jill E. Senner
Opportunity to Expand Research on Chromosome 15q Duplications by N. Carolyn Schanen
Medical Options for Challenging Behaviors by Edwin H. Cook
On the Move: Strategies for Coping with High Activity Levels by Angela Searcy
Working with Soma: Spencer's Story by Teri
Sound Therapy: What Is It? by Dorinne S. Davis-Kaulgin
​Family Portraits: Fabio by Christinee

(therapy, integration, Protected Tomorrows, financial planning, ACC, cell repository, Coriell, behaviors, treatment, high activity, ADHD, rapid prompting method, RPM, Italy, hearing, sensitivity)