A blog about resources for autism and care and treatment.

Saturday, April 21, 2012

Let's Talk Autism w. Shannon & Nancy Discuss New CDC Autism Findings

Shannon and I highlight important autism news including the new CDC findings, as well as interview Attorney, autism mom, and Director of Special Needs Network, Areva Martin on Let's Talk Autism with Shannon & Nancy.

Thursday, April 19, 2012

Fearless Women Global; Dr. Doreen Granpeesheh

Join me and ACT Today!'s Founder / President Dr. Doreen Granpeesheh...

 Fearless Women™ Global
Presents

Fearless Women, Visions of a New World
Los Angeles Event
May 18 & 19, 2012
The Sportsmen’s Lodge Event Center
Studio City, California 


or
 
(bring a friend for half price for both events)

Red Carpet, Awards Dinner and Concert
Date: Friday, May 18, 2012  Time: 6:30 PM

Red Carpet Gala
Awards Dinner-hosted by Rebecca Grossman & Frances Fisher
Concert-Featuring, Faith Rivera, Sherry Williams, Stephanie Quayle & more
Book Release & Signing
Cost: $125
(Early Bird Pricing until April 25 - After: $150)

Fearless Women Global Un-Conference - One Day Event
Date: Saturday, May 19, 2012  Time: 9:00 AM - 4:00 PM

Speakers - Marcia Wieder, Founder of Dream University & The Million Dreams Campaign

Singers - Faith Rivera & Marsha Mercant
 Fearless Comedy - America's favorite hearing impaired comedienne, Kathy Buckley
Luncheon
- Fearless Women Panel~Moderator: Linda Gray

DR. DOREEN GRANPEESHEH
Panelists: Dr. Doreen Granpeesheh (foremost authority on autism), Mona Polacca (one of the 13 Indigenous Grandmothers), Kathy Eldon (founder of Creative Visions Foundation), Lieutenant Colonel Karen Mertes (founder of Fulfill Your Destiny Foundation & Cover Girl of our book), Tabith Kyambadde (from Uganda, founder of African Missions Outreach),
Connecting, Sharing & Inspiring

Cost: $125
(Early Bird Pricing until April 25 - After: $150)

BOTH EVENTS Only $200 (After April 25 - $300)

Don't miss this inspirational event like no other!!

Join us in celebration of the powerful fearless woman you are and be a part of the Fearless Evolutionary Movement! Gather with some of the most dynamic women from around the world who are featured in a powerful new book by world-renowned photographer Mary Ann Halpin, Fearless Women, Visions of a New World.

Join in the dialogue to make this world a better place. Participate in this unique event that will ignite the calling in your heart to embrace your sword of courage, move you through your fear to your vision and empower your life to transform the world! Be inspired! Be fearless!

Make your reservations now!
Fearless Friends off for both events:

Come to only one event:
http://fearlesswomenglobal.com/events/


Wednesday, April 18, 2012

Autism Research Group Launches Non-Profit Organization to Improve Quality of Life for Individuals with Autism


Some good news for parents of children with autism!

www.AutismResearchGroup.org


Autism Research Group (ARG) announced today the launch of its pioneer non-profit organization highlighting its mission of placing individuals on the autism spectrum and their families first. ARG is founded on the principal of using science to improve the quality of life for individuals with autism spectrum disorders (ASD) and their families and caregivers. Individuals with ASD have the right to live life to the fullest and this right transcends social, cultural, and economic barriers.

“Our organization does research that matters to families of children with autism and our mission is to share the results with the world. ARG’s research findings will allow more families to access effective treatment,” says ARG Executive Director Jonathan Tarbox, PhD, BCBA-D.

This launch coincides with the findings of the Centers for Disease Control and Prevention (CDC) newly released report showing 1 in every 88 children in America has an autism spectrum disorder; a 78% increase since the study first began in 2002. The latest figure reconfirms that autism is more prevalent than juvenile diabetes, childhood cancer, and pediatric AIDS combined. ASD is a range of complex neurodevelopmental disorders, characterized by social impairments, communication challenges, and restricted, repetitive, or stereotyped patterns of behavior. Autistic disorder is the most severe form of ASD, while other conditions along the spectrum include milder forms known as Asperger's syndrome (AS), Childhood disintegrative disorder (CDD) and Pervasive developmental disorder not otherwise specified (PDD-NOS).

“Our first step in reaching out to families affected by autism is our Parent-Generated Research Initiative. It’s designed to give parents a voice on what matters most to them” says Tarbox.

Parents can complete a 10-question survey at www.autismresearchgroup.org and ARG will use the input to design research programs that directly address the needs and preferences of families affected by autism.

ARG’s objectives include:

· Innovate and test new treatments that hold promise for improving the lives of individuals with autism spectrum disorders.

· Increase awareness and access to treatments that are already proven to work.

· Conduct research to improve the effectiveness of proven treatments.

· Establish benchmarks to increase accountability for the effectiveness of services for individuals with autism spectrum disorders.

About the Autism Research Group:
The Autism Research Group (ARG), is a non-profit organization dedicated to identifying, evaluating, and disseminating treatments that make a real, measurable difference in the lives of individuals on the autism spectrum and their families. ARG uses science to improve quality of life for people with autism spectrum disorders and the families who love them. The Autism Research Group is a non-profit organization. For more information about the Autism Research Group, visit www.autismresearchgroup.org.

Tuesday, April 17, 2012

ACT Today! for Military Families 2nd Annual Run/Walk and ONEHOPE Family Festival Raises Over $105-Thousand Dollars


ACT Today! (Autism Care and Treatment Today!), a non-profit organization whose mission is to provide resources, care and treatment to children with autism, announces its 2nd Annual ACT Today! for Military Families (ATMF) 5k/10k Run/Walk and ONEHOPE Family Festival raised over $105,000. The event, held on Saturday, April 7 at Mission Bay Park in San Diego, California was hosted by actor Mark Christopher Lawrence (“Chuck”), NBC San Diego Morning Anchors Jason Austell and Marianne Kushi, and ENERGY 103.7 announcer J.R. Proceeds from the Run/Walk will help provide resources and assistance to military children with autism whose families cannot afford the necessary care and treatment their children need to reach their full potential.

Team Christian

Approximately 1,100 individuals and families participated in the 5k,10k and Kids Fun Run. The top fundraising team was the Red Hot Dragons which was led by Karen Driscoll who was also the the top individual fundraiser. The San Diego community came out in support of military children with autism, including Assemblyman Nathan Fletcher, Fitness Ambassador Kathy Kaehler, and the San Diego Padres Friar. The Run/Walk and ONEHOPE Family Festival featured live entertainment by 2-U-NEEK and Graceland Mafia, specialty vendors, children’s activities and an egg hunt contest for children and the young at heart.
Start of 10K
ACT Today!'s Exec. Director Nancy Jackson, Assemblyman Nathan Fletcher, Fitness Ambassador Kathy Kaelher, Publicist Daphne Plump, Actor Mark Christopher Lawrence
“We are so thankful that the community of San Diego to embraces this important cause, and join us in supporting the families of those who protect our freedoms,” says ACT Today!’s Executive Director Nancy Alspaugh-Jackson.
ACT Today Executive Director Nancy Alspaugh-Jackson



According to the Center for Disease Control and Prevention (CDC), 1 out of 88 children in America is diagnosed with an autism spectrum disorder (ASD), making ASD more prevalent than juvenile diabetes, childhood cancer and pediatric AIDS combined. These disorders are characterized, in varying degrees, by difficulties in social interaction, verbal/nonverbal communication and repetitive behaviors. They include Autistic disorder, Rett syndrome, Childhood disintegrative disorder (CDD), Pervasive developmental disorder-not otherwise specified (PDD-NOS) and Asperger’s syndrome.


Event Sponsor Center for Autism and Related Disorders

ACT Today Founder/ President Dr. Doreen Granpeesheh
ONEHOPE Family Festival Sponsor Jake Kloberdanz
Sponsors of ACT Today!’s 2nd Annual 5k/10k Run/Walk and ONEHOPE Family Festival include: ONEHOPE Wine, the Center for Autism and Related Disorders, Autism Speaks, NBC San Diego, ENERGY 103.7, TriWest Healthcare Alliance, Butterfly Effects, SeaWorld, Ralphs, Jersey Mike’s, Coffee Bean and Tea Leaf, Wells Fargo, The Great Plains Laboratory, Community Coaching Center, Navy Federal Credit Union, Granite Investment Group, Spreebird Deals, Newport Rib Company, Glanbia Nutritional, and Stone Brewery.



About ACT Today!:
ACT Today! (Autism Care and Treatment Today!) is a 501(c)(3) non-profit organization dedicated to providing resources and funding to families of children with autism who cannot afford or access the necessary tools their children need to reach their full potential. For more information about ACT Today!, visit: www.act-today.org.


About ACT Today! for Military Families:
ACT Today! for Military Families (ATMF), is a national program of ACT Today!. It was launched in July 2010. ATMF works to improve awareness and delivery of effective autism services, and provides financial assistance to military families to help defray out-of-pocket costs associated with autism treatments, services, and other quality of life programs. For more information about ACT Today! for Military Families, visit: www.acttodayformilitaryfamilies.org.

Monday, April 16, 2012

ACT Today and Autism Speaks on USS Intrepid

April 2, onboard the USS Intrepid (NY, NY) ACT Today!'s Executive Director Nancy Alspaugh-Jackson (2nd from left) with fellow autism supporters...Suzanne and Bob Wright of Autism Speaks and retired NASA Astronaut Jeffrey Alan Hoffman. It was a great evening recognizing those who are leading the mission of helping military children with autism.


Sunday, April 15, 2012

Matt Asner Speaks with Nancy Alspaugh-Jackson on Autism



Southern California Executive Director of Autism Speaks, Matthew Asner, sits down with ACT-Today Executive Director, Nancy Alspaugh-Jackson, to discuss his new role at Autism Speaks and his experience as a father of a child with autism.

Wednesday, April 11, 2012

Texas Mom Creates Autism App


The mother of a boy with autism has launched an app to make her life and the lives of all other parents with autistic children a little easier, myFOXdfw reported.
Plano resident Karen Carmeli said she spends a large portion of her day caring for her 9-year-old son Yair, who lives with autism. And the idea for her app began about a year and a half ago as a desire for simple organization.

The resulting app, My Autism Day, was approved by Apple in March and is now available on iTunes. It has different sections for tracking different things like health, activities, behavior, nutrition and more.

“I write down if he was sick or not. I write down his medicine and supplements,” Carmeli said. “All the input I get, I have one place to put it. I don’t have to remember where I put a paper. I don’t have to search for old emails from previous weeks. It’s really easy access.”

Carmeli said she had zero experience creating apps and taught herself with a book.
Read more: http://www.foxnews.com/health/2012/04/11/texas-mom-creates-autism-app/#ixzz1rjsNA1Xt



Published April 11, 2012
FoxNews.com

Thursday, April 5, 2012

Scientists Link Gene Mutation to Autism Risk

By 
New York Times

Kevin P. Casey for The New York Times
Teams of scientists working independently have for the first time identified several gene mutations that they agree sharply increase the chances that a child will develop autism. They have found further evidence that the risk increases with the age of the parents, particularly in fathers over age 35.

The gene mutations are extremely rare and together account for a tiny fraction of autism cases — in these studies, only a handful of children. Experts said the new research gave scientists something they had not had: a clear strategy for building some understanding of the disease’s biological basis.

Scientists have been debating the relative influence of inherited risk and environmental factors in autism for decades, and few today doubt that there is a strong genetic component.

But biologists have groped in vain for a reliable way to clarify the underlying genetics of these so-called autism spectrum disorders, including Asperger syndrome and related social difficulties that are being diagnosed at alarmingly high rates — on average, in one in 88 children, according to a government estimate released last week.

Previous studies have produced a scattering of gene findings but little consensus or confidence in how to proceed.

The new research — reported in three papers posted online on Wednesday in the journal Nature — provides some measure of both, some experts said. There are probably hundreds, perhaps more than a thousand, gene variations that could disrupt brain development enough to result in social delays.

An intensified search for rare mutations could turn up enough of these to account for 15 percent to 20 percent of all autism cases, some experts say, and allow researchers a chance to see patterns and some possible mechanisms to explain what goes awry.

“These studies aren’t so much a breakthrough, because we knew this was coming,” said Jonathan Sebat, a professor of psychiatry and cellular and molecular medicine at the University of California, San Diego, who was not a part of the research teams. “But I’d say it’s a turning point. We now have a reliable way forward, and I think it’s fair to expect that we will find 20, 30, maybe more such mutations in the next year or two.”

Other researchers were more cautious, saying that the genetics of rare mutations was not yet well enough understood to make conclusive statements about their effect on the behavior of specific genes.

“This is a great beginning, and I’m impressed with the work, but we don’t know the cause of these rare mutations, or even their levels in the general population,” said Dr. Aravinda Chakravarti of the Institute of Genetic Medicine at the Johns Hopkins University Medical School, who was not involved in the studies. “I’m not saying it’s not worth it to follow up these findings, but I am saying it’s going to be a hard slog.”

The three research teams took a similar approach, analyzing genetic material taken from blood samples of families in which parents who have no signs of autism give birth to a child who develops the disorder. This approach gives scientists the opportunity to spot the initial mutations that accompany the condition, rather than trying to work though possible genetic contributions from maternal and paternal lines. In all three studies, the researchers focused on rare genetic glitches called de novo mutations.

De novo mutations are not inherited but occur spontaneously near or during conception. Most people have at least one, and the majority of them are harmless.

In one of the new studies, Dr. Matthew W. State, a professor of genetics and child psychiatry at Yale, led a team that looked for de novo mutations in 200 people who had been given an autism diagnosis, as well as in parents and siblings who showed no signs of the disorder. The team found that two unrelated children with autism in the study had de novo mutations in the same gene — and nothing similar in those without a diagnosis.

“That is like throwing a dart at a dart board with 21,000 spots and hitting the same one twice,” Dr. State said. “The chances that this gene is related to autism risk is something like 99.9999 percent.”

The team found that a third child had a de novo mutation in another gene suspected of a possible link to autism risk — but one such mutation is not enough to make the case.


But a team led Dr. Evan E. Eichler, a professor of genome sciences at the University of Washington in Seattle, independently found the same thing in a study of 209 families: one child with autism — and a glitch in the very same gene.
Enlarge This Image

The researchers added still another gene, finding two unrelated children with autism in their own sample who had de novo mutations in the same location. No such coincidences occurred among people in the studies who did not have an autism diagnosis.

Finally — in the third paper — a team led by Mark J. Daly of Harvard ran its own analysis of these three genes, among others, and found yet more cases.

Everyone typically has at least one de novo mutation, Dr. Daly said, but his study suggested that “kids with autism have a slightly higher rate, on average, and the effects are more severe.”

All three studies also found evidence that the risk of de novo mutations increases with parental age. In an analysis of 51 de novo mutations, Dr. Eichler’s group found that glitches were four times more likely to originate in DNA from the male than from the female. The risk is higher in fathers at 35 than at 25 and seems to creep up with age. This offers one possible explanation for earlier research linking older fathers with autism’s rise: older male sperm is more subject to small, perhaps random glitches that in rare cases affect brain development.

The emerging picture suggests that the search for therapies will probably be a very long one, and that what is known generally as autism may represent a broad category of related but biologically distinct conditions. But both Dr. Eichler’s and Dr. Daly’s groups found some evidence that high-risk genes interact in shared biological processes.

“This is really the tip of the tip of the iceberg,” Dr. Eichler said, “but I think the important thing is all of us agree on where to start.”

Dr. State added, “From my standpoint, this is a big deal, because I’ve been at this a long time, and for years and years you couldn’t get anyone to believe you’d even found one gene” that significantly increased risk.

Finding Some Zen

Guest Blogger
Nicole Lindstrom

Rushing around is something that is common for people with children. It is even more common for families with children that have special needs/autism. Last week between my drop off at school and on to one of our therapy appointments, I had a moment to escape to yoga.

I am lucky enough to be able to practice yoga once or twice a week due to my husband’s availability at home. Yoga has been something that I viewed as a stress relief but now to me it has become a need and a way of life. During one of these classes, my yoga instructor ended our class with a spritz of lemon grass green tea spray while we were relaxing in our corpse pose. She sprayed this spray as she said to “open the mind and the sense."

While lying there, I recalled the week. It had been very hectic to say the least. My son who has been progressing this school year had picked up some frustrating behaviors boarding on obsessive traits with his schoolwork having to be perfect. Mind you in the beginning of the year he could barely color and recognize the lines now he is coloring perfectly but finding going outside the lines was causing meltdowns in the classroom, thus we had to pick up some more help, behavioral therapy. There was my one step back.


The spray that was spritzed over me while lost in my thoughts and search for peace really did open my mind and senses. It was such a beautiful smell. It made me realize when was the last time I wasn’t so lost in my thoughts and worries that I actually used my senses. Really stopped and “smelled the roses”.
As parents and caregivers to these wonderful children we get so focused on our organized day and our to and fro that we have little time to think about our thoughts and our needs.
When was the last time as a parent you truly listened to the words of a song like you did back in high school when you believed some songs were written just for you? Or watched the beauty of the day despite what is going on in your life? I believe a means of good therapy for parents of autistic children should be a need to find a good escape. A place or time in the day where you can find time for your own inner thoughts to just simply be.

After that class, I cried, I cried for no reason at all except for the pure fact that I smelt something like I did for the first time in years. I took a moment to breathe and to focus on the moment at hand. I actually took a moment for myself to recharge and to know that I am doing the best that I can. By doing so, it allowed me to battle the rest of the week with some renewed energy.
What is your escape?



Wednesday, April 4, 2012

Andrekka Runs for Military Children with Autism!


Running to Support Military Families Touched by Autism
By Andrekka Lanier, ACT Today for Military Families
Campaign Director
I would love to be able to include wonderful fitness tips on running in general and share advice with other female runners out there, but alas I have to report that I am not a runner. In awe, I have watched the wonderful creatures who get up early, strap on their carefully selected shoes, don their wonderful running outfits and headphones and take to the trails and pavement for miles at a time.


But on April 7, 2012 I will run a 5K for ACT Today! For Military Families and attempt to join their ranks, if only for a fleeting moment. Against some medical advice, several odds, two knee surgeries, and a few months of physical therapy later, I will run. I would love to say that one of the simplest and most effective methods of exercise and stress relief has drawn me in, but that is not why I run. I believe in Autism Care and Treatment for families, especially our military families; however, that is not the reason I choose to run either. I am running for my Alexavier (Alex, if you will). Alex was diagnosed with Autism three months before his third birthday, nearly three years ago. At the time he was unable to speak and he communicated with grunts, pointing, and gestures. He had been dismissed from daycare centers, church child-care, and we were often afraid to take him out in public settings like the supermarket, for fear of a meltdown.

My professional education and training did not prepare me for the dismay and helplessness I felt while watching my child go through terrible tantrums for hours at a time until he was both physically and mentally exhausted, over what were seemingly the smallest items, like a small bag of chips. I resonated with the fact that my child did not seem to register my presence or acknowledge the bond between mother and child and would not tolerate the typical displays of affection, in fact, we rarely touched him with the exception of changing or bathing, so as not to trigger a negative reaction. After receiving his diagnosis of moderate to severe Autism, we were on a waiting list in Yuma, AZ for almost two years for all services: physical therapy, occupational therapy, speech therapy, music therapy, applied behavioral analysis (ABA) therapy, psychotherapeutic services—yet we did not receive any because none were available.

My husband and I implemented the strategies that we could at home and we found an in-home daycare provider, who barely spoke English to care for Alex. Together Alex and she learned to communicate with one another. Tips were shared between both home fronts and we began noticing a change in Alex’s communication skills both at home and in the community. Unfortunately, we uprooted Alex and moved him to CA, were my husband and I had already researched treatment centers and we were breathing a little easier now, knowing that Alex would be able to receive the 40 hours (per week, until the age of 8) of ABA therapy that had been recommended almost two years ago.

After less than a year with intensive ABA therapy services, physical, occupational, and speech therapy services along with private pre-school placement and a concurrent Kinderbridge program placement, and in-home reinforcements/strategies, Alex began improving dramatically. To date, he has graduated from occupational therapy services and a visiting psychologist could not identify him in a classroom full of peers when asked which child was on the spectrum. Alex has the maturity of a 9 year old at the age of 5, in a Kindergarten classroom he reads on a 2nd grade level. He now socially interacts with his peers and can adapt rather well to changes in routine and he asks for hugs and tells me he loves me.

THIS is why I run. I’m running as a symbol of the endurance my young son has demonstrated in his battle against Autism. I will shirk my injuries and whatever small pains will be miniscule in comparison to the social stigma that Alex has overcome (and for what he will rail against in the future). I run for the parents who are less fortunate than we are, who may never hear their child speak, reciprocate emotions and affection, or engage in typical social activities but will go to the ends of the earth to provide the best quality of life for them simply because they deserve it and that is the legacy and duty of a parent.

The month of April is the month of Autism Awareness and the month of the Military Child. Alexavier is both. However, I run because the psychologist who diagnosed Alexavier told my husband and I to start the mourning process. Conversely, I can’t think of a better way to celebrate the various facets of Autism Awareness and the Military Child, as each category comes with an array of battles and public misconceptions that must be overcome at every turn. Thankfully, they don’t have to do it alone because people like me, like you will take out the time and energy to demonstrate support as we run.

Andrekka Lanier is the campaign director for ACT Today! For Military Families — an advocacy group that helps Military families of an autistic child. A Marine spouse and mother of an autistic child, Andrekka can answer questions on special consideration for these unique families.

RUN WITH ANDREKKA


THIS SAT - SEE YOU THERE!

Sunday, April 1, 2012

ACT Today! Highlights Need for Worldwide Autism Awareness

United States Marine Forces, Korea 5k Run and 1k Kids Fun Run in Seoul, South Korea and ACT Today!’s (Autism Care and Treatment Today!) 2nd Annual 5k/10k Run/Walk and ONEHOPE Family Festival in San Diego, California on April 7, 2012 help encourage worldwide autism awareness for the military child.
ACT Today! (Autism Care and Treatment Today!), a national non-profit organization whose mission is to provide care and treatment to children with autism, applauds the Good Neighbor Program and the U.S. Marine Forces, Korea for their efforts to spread autism awareness and support for military families affected by autism with a 5k Run and 1k Kids Fun Run. The 5k Run begins at 8:30 am and the 1k Kids Fun Run starts at 9:00 am. Both runs will take place on board US Army Garrison Yongsan in Seoul, Korea on April 7, 2012. The community event is a free “open run.”

Expected participants include United States Marines, Marine families, and representatives from the other US Military Services in Seoul, Korea as well as members of the Korean Marine Corps, and local Korean supporters and runners. Autism resources will be made available to participants.

"April is an opportunity to educate the public about autism and issues that face the military family with children with autism,” says ACT Today! Executive Director Nancy Alspaugh-Jackson. “The US recognizes April as the Month of the Military Child and National Autism Awareness Month. We see this as a chance to not only continue our efforts of spreading autism awareness throughout the United States, but join hands with our good neighbors overseas. This event brings military families together with the Korean community supporters in support of autism awareness.”


On the same day, ACT Today! will host its 2nd Annual ACT Today! for Military Families (ATMF) 5k/10k Run/Walk and ONEHOPE Family Festival from 7 a.m. to 11 a.m. at Mission Bay Park in San Diego, California. Registration for the run is required and available online at www.acttodayformilitaryfamilies.kintera.org. Proceeds from the run will benefit military children with autism.

According to the Center for Disease Control and Prevention (CDP), 1 out of 88 children in America is diagnosed with an autism spectrum disorder (ASD), making ASD more prevalent than juvenile diabetes, childhood cancer and pediatric AIDS combined. It is estimated 1 in every 88 military children has ASD. These disorders are characterized, in varying degrees, by difficulties in social interaction, verbal/nonverbal communication and repetitive behaviors. They include Autistic disorder, Rett syndrome, Childhood disintegrative disorder (CDD), Pervasive developmental disorder-not otherwise specified (PDD-NOS) and Asperger’s syndrome.


About ACT Today!:
ACT Today! (Autism Care and Treatment Today!) is a 501(c)(3) non-profit organization dedicated to providing resources and funding to families of children with autism who cannot afford or access the necessary tools their children need to reach their full potential. For more information about ACT Today!, visit: www.act-today.org.

About ACT Today! for Military Families:
ACT Today! for Military Families (ATMF), is a national program of ACT Today!. It was launched in July 2010. ATMF works to improve awareness and delivery of effective autism services, and provides financial assistance to military families to help defray out-of-pocket costs associated with autism treatments, services, and other quality of life programs. For more information about ACT Today! for Military Families, visit: www.acttodayformilitaryfamilies.org.