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CDC Vaccine & Autism Research: Explosive New Statement from a Lead Researcher

August 29, 2014

dr bob sears 2014 pic

By Dr. Bob Sears, Pediatrician and TACA Physician Advisory Member

 

A senior researcher at the Centers for Disease Control and Prevention “blew the whistle” on one of the studies that he and a team of colleagues published in 2004 in the American Academy of Pediatrics Journal (1). At the time, their study reported no significant link between the Measles, Mumps & Rubella (MMR) vaccine and autism. According to a CNN report published on August 28, 2014 (2), CDC senior researcher Dr. William Thompson contacted Dr. Brian Hooker last November and informed him of foul play. Dr. Thompson told Brian Hooker that the data initially collected by CDC researchers actually showed that African-Americans who were given the MMR vaccine prior to 36 months of age were significantly more likely to develop autism. This team of CDC researchers then decided to remove the data collected on some of the children which supported this association (claiming they did so because they could not verify their birth certificates), resulting in the data no longer showing a significant connection between the MMR vaccine and autism.  Then they published their research, claiming that their data did not show a link between the MMR vaccine and the risk of autism. What is important about this paper is that it had an apparent large influence on the Omnibus Autism Proceedings.  For those of you who are not familiar with these Proceedings, parents who felt their children developed autism after vaccination (including with the MMR vaccine) had their cases dismissed in federal court because studies (including this one in question) showed no significant association between vaccinations and autism.  If further investigation of this study (and others) reveals that there truly is an association between autism and MMR (and possibly other vaccines), but this association was hidden by the CDC, this means that thousands of parents and their children were denied justice in their day in court.

 

Brian Hooker reviewed the study data and published his own analysis this week in the journal Translational Neurodegeneration. The study was viewable online until very recently, when it was removed from the journal’s website. The reason cited for removal: “This article has been removed from the public domain because of serious concerns about the validity of its conclusions. The journal and publisher believe that its continued availability may not be in the public interest. Definitive editorial action will be pending further investigation.” (3)  This re-analysis indicated a 340% increased risk of autism in African-American children who received the MMR vaccine before the age of three compared to those after the age of three  (4.)

 

When I first heard rumors of this story days ago, I didn’t believe it. But now, Dr. Thompson has released a public statement through legal counsel (5.) He has verified these facts. The research did initially show an increased risk of autism in African-American boys. Dr. Thompson has shared this statement: “I regret that my coauthors and I omitted statistically significant information.”

 

So, what do we do with this information?  First, this information does not confirm that there is a link between MMR vaccine and autism. It suggests that the vaccine may increase the risk for African-American boys. So let’s keep things in perspective.  Secondly, we can’t proclaim from the rooftops that the MMR vaccine causes autism. Since this finding was in a small subgroup of the larger population studied, it is not clear if this is a statistical anomaly. Thirdly, it is not clear what other confounding factors were associated with this subset of the study population that could also have resulted in this association. A more detailed study could have addressed these questions, but this was not done.

 

This does leave us with is a whole lot of distrust and uncertainty in an institution which is supposed to be the Center for Disease Control and Prevention.  This isn’t the first instance of malfeasance in autism/vaccine research. Several years ago, Dr. Poul Thorsen was indicted for stealing $1 million of CDC research money during his autism/vaccine research work with the CDC. This called into question the validity of two of the largest studies he was involved in (which showed no vaccine/autism link): Thimerosal and the occurrence of autism: negative ecological evidence from Danish population-based data, Madsen K, Thorsen P, et al, Pediatrics 2003; and A population-based study of MMR vaccination and autism, Madsen K, Thorsen P, et al, New England Journal of Medicine 2002 (6.)

 

The issue of conflict of interest in CDC vaccine research is not new. In June 2000, the U.S. House of Representatives released results on an investigation revealing that the rules employed by the FDA and CDC were weak, enforcement was lax, and committee members with substantial ties to vaccine manufacturers had been allowed to participate in committee meetings. The report also found that:

  • The CDC routinely granted waivers from the conflict-of-interest rules to every member of the ACIP (the board that approves vaccines)
  • Members who were not allowed to vote on a vaccine due to financial conflicts were still allowed to deliberate and advocate for that vaccine during meetings from which they should have been banned
  • The chairman of the ACIP at that time owned 600 shares of stock in Merck (a maker of vaccines, including the MMR vaccine)
  • The ACIP members did not always provide accurate financial disclosure statements.

 

The full report is available here: http://www.nvic.org/nvic-archives/conflicts-of-interest.aspx

 

The icing on the cake is that Dr. Julie Gerberding was the head of the CDC from 2002 to 2009.  She now works for Merck and leads their vaccine division (7.) She’s one of the most respected experts in her field. But, the fact remains that she was in charge of vaccine/autism research during that eight year period at the CDC, and now she works for the maker of the very vaccine most of the research was about.

 

The bottom line on this issue is the same bottom line that I’ve been writing about for years. We need unbiased research done by people without any conflict of interest to study large groups of vaccinated and unvaccinated children in order to resolve the vaccine/autism debate. Because very little such research has been done and issues referenced in this blog, is it any wonder more and more people are beginning to doubt vaccine safety?

 

If anyone was expecting an apology from the CDC, you will be disappointed. They have already stepped up with a statement that basically rejects any and all wrongdoing in this matter. They criticize Dr. Thompson for speaking out against research that he himself was involved in. They go on to point out all the great research they have done that they say clearly demonstrates no relationship between MMR vaccine and autism. You can view their response (8.)

 

Some may be reading this article and think – what should happen next?  We should request a complete investigation of this new information and a congressional hearing immediately. When small pox was recently found in an FDA laboratory, a congressional hearing occurred within 3 weeks (9).  Isn’t the safety of our children and a possible link between autism and vaccination worthy of an immediate congressional investigation?

 

Here are some suggestions as to who to contact:

 

1)      Share the Thompson statement (5) with House Oversight and Government Reform Committee Chairman Darrell Issa and Congressman Bill Posey.  Request a complete investigation and congressional hearing.

Contact information for Congressman Issa:
2347 Rayburn House Office Building Washington, DC 20515
Phone: 202-225-3906   Fax: 202-225-3303

Contact information for Congressman Posey:
120 Cannon HOB, Washington, DC 20515
Phone: (202) 225-3671 Fax: (202) 225-3516

 

2)      Share the statement (5) with James M. Perrin, MD, FAAP, President of the American Academy of Pediatrics. Request a complete investigation and support for a congressional hearing.

 

Contact information for Dr. Perrin:

American Academy of Pediatrics, 141 Northwest Point Blvd Elk Grove Village, IL 60007

 

And whatever those answers are as a result from these important efforts, families need to hear them.

Dr. Bob Sears

Pediatrician and TACA Medical Advisory Board Member

Pediatrician and author of The Autism Book: What Every Parent Need to Know About Early Detection, Treatment, Recovery, and Prevention and The Vaccine Book.

 

References:

 

  1. http://pediatrics.aappublications.org/content/113/2/259
  2. http://www.cnn.com/2014/08/27/health/irpt-cdc-autism-vaccine-study/
  3. http://www.translationalneurodegeneration.com/content/3/1/16/abstract
  4. http://www.globalresearch.ca/autism-links-to-vaccines-whistleblower-reveals-evidence-of-criminal-coverup-by-the-centers-for-disease-control-cdc/5397928
  5. http://www.morganverkamp.com/august-27-2014-press-release-statement-of-william-w-thompson-ph-d-regarding-the-2004-article-examining-the-possibility-of-a-relationship-between-mmr-vaccine-and-autism/
  6. http://www.infowars.com/just-another-day-at-the-office-scientific-fraud-scandal-at-the-cdc-is-simply-routine/ & https://oig.hhs.gov/fraud/fugitives/profiles.asp
  7. http://www.npr.org/blogs/health/2009/12/merck_hires_gerberding_to_run.html
  8. http://sharylattkisson.com/cdc-responds-to-allegation-it-omitted-vaccine-autism-study-link-576
  9. http://www.usatoday.com/story/news/nation/2014/07/16/congress-hearing-cdc-lab-safety-anthrax-incident/12721585/

Autism then STROKE

August 27, 2014

By guest blogger Chelsi Coate – long time TACA mom and volunteer

 

Christian is 11 and going into the fifth grade. He is kind, funny, sarcastic and charming. He loves anything that has to do with film making. He plans on attending his second film festival this year. He is also very skilled at computer programming and can whip up websites in no time at all.

Christian also has autism. He has come so far since his diagnosis in July of 2005.

I want to share something that we recently experienced that was very shocking and traumatic for our family. Actually it was life threatening; the scariest event I have witnessed as a parent. I hope by doing so, we might be able to help other families that could potentially go through the same thing.

On Christian’s 11th birthday, a Friday, he started complaining of neck pain. For the next couple days he was throwing up and that led to excruciating headaches. Any light or sound caused him so much pain. He wore sunglasses inside and we had to turn off anything in the house that made sound. He could barely walk and he was extremely disoriented. We thought he was suffering from a very bad cold or virus.

Monday morning I decided to take him to the doctor’s office. They also believed that he either had the stomach flu or a migraine. We had some blood work done and the doctor said that if he was feeling worse in the morning to call. The next morning none of his symptoms had subsided. I called the doctor’s office that morning and we were told to head up to our local children’s hospital to rule out “aseptic viral meningitis”. We drove to the hospital and wheeled him into the Emergency Room. As he was taken back to triage, we started to notice that he was slurring his words and mixing his sounds up. The first doctor to see him wanted a CT scan done immediately. The doctor came back and asked me to step into the hallway. He told me that there were some abnormalities found. He took the image and put it up on the light board and I could clearly see that there was a huge part of his brain that was a different color. “It seems that your son had a stroke on the left side of his brain”.

Arterial Ischemic Stroke- Middle Cerebral Artery- Left Acute.

When your son has a stroke, all of a sudden everyone around you moves a little more quickly. In my vision everything went into slow motion and I felt helpless in helping my son.

Christian was taken up to get an MRI to get a clearer picture of what was happening. When those results came back, it confirmed what we were already told. A neurologist met with us to go over the timeline of the event. Something I never knew was that strokes are actually about 7-10 days long. They are like a mountain. They start out low and slow and then the swelling peaks and then everything starts to go down and recovery begins.

Thinking back 7-10 days, we remembered that on Wednesday his two therapists had mentioned that something was off with his speech. Then the neck pain started two days later…and so on.

Ok. So we know he had a stroke. So now what? They wanted to admit him to monitor overnight. The doctor started to explain to us what part of the brain was affected and the type of things that Christian would struggle with from now on. Everything she described that he would struggle with were things that he had struggled with his entire life that I always assumed was because of his autism. Could there have already been damage to that part of the brain before the stroke?

Two days later, Christian was recovering really well and wasn’t showing any signs of further complications so we were getting ready to get discharged. While he was lying in bed and I was making some phone calls to get therapy started up at home it was like his light switched off. His eyes went dull and he started slurring his words terribly. I kicked into high gear and started scrambling to get a doctor immediately. When they saw him, he was rushed down for an urgent CT scan to see if the stroke had progressed or if he had a brain bleed. We got back up to his room and waited for the results. It showed that nothing had changed. The same second we got those results, I looked down and Christian started shaking uncontrollably. It all happened so fast. He was having a grand mal seizure. Christian had never had a seizure before in his life. He was given something to stop the seizure and was rushed up to the ICU (again.)

The next morning he was stable and looking much better. Everyone was telling us that seizures after a stroke are common and as long as he was stable we could go home that night.

The neurologist on call decided he wanted to do an EEG on Christian that day, just to make sure that nothing else was brewing. If everything looked good, then we could be discharged (again!)

We received the EEG results and were told that he was basically having subclinical seizures all day and night. He was hooked up to the EEG machine for 6 days as they tried to get the right seizure medication, timing and dosage. At this point we had been at the hospital for a week working towards the goal of stopping the ongoing seizures.

Finally, we were feeling pretty good about the medication regimen that he was on. We weren’t seeing any breakthrough seizures so we were confident about going home. I was focused on Christian’s well being. But this entire experience shook me to my core. How could this happen to a healthy kid?

After 6 days, there was a shift change with doctors and the new neurologist on call decided that she wanted to take a different approach and put a stop to his subclinical seizures all together. She wanted to stop one of his two seizure medications and replace it with a new one. He would have one large dose of this new medication and then continue with maintenance doses. She was confident that it would stop the seizures completely.

Immediately after he received this new medication through his IV, he had an extremely adverse reaction. He was hallucinating, throwing up, experiencing nystagmus, he lost feeling in his hands and feet and was completely disoriented with paranoid thoughts. This set us back another four days as it took that long to get the medication out of his system enough to not have any more side effects. After our persistence, we went back to our original neurologist’s approach and continued on with our first seizure medication regimen. It is incredibly scary to see medication have such a negative adverse affect and still not work on my son!

We’ve been home from the hospital for about four weeks now. Christian has physical, speech and occupational therapies once a week. He has a hematologist, cardiologist, neurologist, stroke specialist and neuro-psychologist. We have had dozens of tests, blood work, and repeat MRI’s to try and figure out why this happened and what we can do to prevent it from happening again. All the results are still trickling in and we’re still trying to put all the pieces together.

We recently discovered that Christian has two blood clotting markers that could have played a role in the stroke. He has elevated Lipoprotein A and elevated Factor V Leiden. These will be monitored by his hematologist. The experts have shared that individuals with these elevated markers could be at risk for strokes and other serious issues.

Christian is almost back to his normal self. There are some gaps in his cognitive skills and physically, he needs to build back up some strength and endurance, but considering the magnitude of what he went through, he is doing amazing.

I share this story to encourage parents to trust their instincts. If this could happen to my family, it could happen to anyone. Parents should never discount symptoms especially regression or medical symptoms similar to what my son experienced. I encourage families to seek urgent medical attention for any family member including a child with autism. Like with autism, the earlier the intervention is received, the better the results.

We are still at the beginning of this new recovery journey and as we learn more, we’ll share more. Feel free to follow Christian’s journey on Facebook under “Christian David Coate Fan Page” or message me on Facebook under “Chelsi Dailey”.

Love and good health, #TeamCoate
xoxo

Vacation with Autism

August 12, 2014

vacation

 

 

 

 

 

 

By Ali Hoffman – guest blogger

I love this post from the Onion, Mom spends beach vacation assuming all household duties in closer proximity to the ocean (1.) This article rings true to many of us with smaller children. Long gone are the days of reading a few books the week of vacation as we are lucky to read a few pages. Bringing a chair to the sand may truly be a sign of optimism as building sandcastles, boogie boarding, and kicking the soccer ball around don’t allow sitting for the most part.

As a parent of a child with autism, I take this post a bit further. I would add assuming all household du-ties and the role of teacher, occupational therapist, speech therapist, nutritionist, and ABA provider as well. Parents in our situation probably smile at reading it but it’s true. As I packed the car for our week-long trip to the Jersey shore, I wondered why we don’t own a Suburban. I needed to pack all the extras to make sure I had everything I might need for Matthew while we were gone. The ever growing list includes: weighted blanket, music therapy pillow, assortment of reading materials for our proud pre-reader, favorite puzzles, a laminated schedule to help provide structure to the day, and an abundance of gluten free and casein free food. I am sure I will forget something. As I packed the car, my husband bet me I couldn’t make it fit but my years of experience with puzzles and Tetris allowed me to prevail and we were on our way.

I know many parents of kids with special needs who don’t vacation. For them, they’d need an RV to bring all the things they might to ensure their child being happy while away. They share that it’s too hard to take their child out of their known environment. The fear that it will be too hard outweighs the possible great that could come from a getaway. I totally get and respect it. What I’ll share is that in our experience, vacationing with a child with autism is fun, hard, emotional, and stressful which is the same as living with our amazing Matthew at home. In the past few years, we’ve increased our travel. We’ve traveled to Disneyworld, the beach, and recently to Boston, MA. What we’ve learned from our travel is that Matt doesn’t mind big crowds, loves big cities, enjoys rides big and small, and can walk for over 5 miles in a day. We wouldn’t have learned those things without traveling. His smile during these activities is amazing and I’m so grateful we push our comfort zone. I reflect often that if Matt was verbal, he might bound down the stairs on a weekly basis in the summer begging us to go to Six Flags for a coaster fix or to graduate to surf lessons from his favorite boogie board. The fact that Matt is minimally verbal forces us to try these activities without knowing if he wants to do them or not. You learn as you go. Sometimes it’s a great victory and other times it is not. It’s important to keep trying because you may discover new interests and fun along the way.

In the pursuit of fun, you will sometimes experience turbulence. These bumps in a trip or outing will test you. Our strategy is to try, be flexible, and pivot. We’ll change the day’s plan, add in a nap or iPad rest period, etc. This means that you might not get to see the fireworks at Disney, walk the beach under the stars, or eat dinner past 6:30 p.m. but it’s okay. If all those adjustments fail, you can always go then pull the emergency cord and go home. We left our beach trip a day early this year. Matt had done a great job but hit a wall. Despite packing everything, trying everything, he hit a wall and was hysterically crying. I paused in that moment. I watched him and realized that it was all out of his control. I saw the fear in his eyes that he was so unhappy and out of sorts but “wanted to stay at the beach.” I held him in my lap with a giant bear hug and after a long while, calmed him. I told him that we were going to go home and sleep in our own beds. I explained everyone was going home the next day so we were just getting a head start. I stressed to him that we would celebrate the next morning by getting our favorite donuts and have a pajama day. I got him calm and we went home. He fell asleep in the car within minutes. He never sleeps in the car.

On the drive home, Mike and I spoke softly to one another about how great the trip was despite the bumps. I told him that one or even several tough moments do not define a trip. We reflected on our June trip to Disney and that we had a great time despite the fact that Matt got so overheated we had to leave Magic Kingdom in a hurry. He bounced back the moment we got him to the hotel and into the pool. Our recent trip to Boston provided a challenge of fasting prior to a medical test. Matt embraced lemon sorbet and walked around Boston with a huge smile. For our family beach trip, he had the best time boogie boarding, spending time with family, eating pizza, and walking a little more than a mile into town. I list out the great moments because that’s how I choose to remember the experience. It’s rare that the bad outweighs the good in my opinion. Mike smiled at me and told me he loved that about me. He admired that I focus on the positive. I thanked him and shared that I developed my ability to embrace the pivot so I could move forward after Matt’s diagnosis. All that stress about how things should be turned into how things might be. My plans converted into guides. I go into all situations excited, nervous, organized knowing that if I need to we’ll regroup, pivot, and try something else. If that doesn’t work, we’ll pull the emergency cord and it will all be okay.

Matt slept in the following day and walked around our quiet house. He was calm, happy, and at peace. He brought us his favorite books and pictures. Mike and I equate it to when you are at a work meeting trying to be on your best behavior even when you truly want to let it all hang out. Matt tries so hard to keep it together, be around people, and join in sometimes. I think that’s amazing. But sometimes you need to let it all hang out and the place where Matt feels most comfortable doing so is at home.

For me, I’ll continue to pack up the scooters, legos, board games, weighted blankets and the most ex-pensive GFCF treats you can buy and realize that it’s not a guarantee that things will go without bumps. You can buy a ticket to fly somewhere knowing that you can survive a two hour flight in the worst of circumstances but realizing you may get lucky and have a smooth and happy flight. When you arrive at your destination, soak in your moments and if you want, write them down to remember into the future. I left Disney with many notes but my favorites were watching Matt enjoy viewing the giraffes from our balcony, roller coasters, water slide at our hotel, and Mike and I drinking wine during every sunset. I left our beach week with Matt enjoying his cousins and grandparents, boogie boarding at the beach, and kicking the soccer ball with us. For me, I read a book, enjoyed a great dinner with my sister and brother in law, and spent time with my niece and nephew. I’m grateful to have these memories and look forward to making more again soon.

Matt Summer Vacation 2014

References:

http://www.theonion.com/articles/mom-spends-beach-vacation-assuming-all-household-d,33431/

 

Other blogs by Ali Hoffman

http://tacanowblog.com/2013/11/15/united-we-stand-divided-we-fall/

 

Editors note: thank you Matt’s mom for the great blog and volunteer efforts on behalf of families living with autism. I am honored to work with you for a common goal. I greatly appreciate your honestly and humor to educate and support. You always inspire and make me smile. ~ Lisa

 

Listen, Learn & Take Action for Your Child

July 28, 2014

Janice Kern, TACA Conference Coordinator

conference-photo

TACA hosts events every week somewhere in the country. There are coffee talks, family picnics, TACA Meetings, Autism Learning Seminars, Family Hikes, TACA Birthday Parties and the list goes on. It’s a fact that TACA has some of the most creative volunteers you’ll ever meet. If they can dream it, they will plan it and invite families affected by autism to join them. Added to this list of events is the Real Help Now Autism Conference.

conference2TACA will host three conferences in 2014. I was very fortunate to attend the Real Help Now East Coast Conference in Philadelphia on April 26th. I was among many TACA parents getting help and giving help. If you haven’t been to a TACA conference, you are missing out and I hope you can attend in the future. If you’ve been there, you know what I’m saying. TACA on your laptop is a great resource but up close and in person, it’s a life changer.

conference-photo5Join parents and professionals like yourself at the next TACA conference. There are two more locations this year. Meet us in Costa Mesa, California or St. Paul, Minnesota. Both locations are where TACA holds meetings and events with TACA chapters. The volunteers who coordinate the chapter efforts will help with conference efforts and would love to meet you in person.

Right now, there are early bird registration rates for both conferences. Take advantage of these super low conference registration rates of $30. This price increases soon. Included in the registration is coffee all day long (wake up!!), lunch, TACA support with TACA mentors, your choice of two conference tracks to follow, and the best speakers with the latest and greatest information. Something that attendees especially appreciate that is unique to Real Help Now is the Conference Workbook. This workbook (guaranteed to each pre-registered attendee) contains every presentation for you to follow along as each presenter shares information with you. You can take notes and take it home as a resource and reference.

conference-photo4There are two more TACA Conferences coming up in 2014. Hopefully you can attend one of them. What if you can’t? Unforunately, TACA can’t host a conference in every city or every state. There is plenty of information to go around so don’t be afraid to send one of your friends the conference information even if you can’t attend yourself. There will still be support and information for you with the TACA Mentor Program, TACA Livechat, TACA USA Yahoo Group, Social Media with TACA’s FaceBook page and the content filled website at tacanow.org.

Click here to print out or post our conference flyers. Share them with providers in your area, post them on your social media sites and help TACA reach more families so that their children can be helped to be as healthy as possible.

Ready to register?

Register for Real Help Now West Coast on October 3rd and 4th in Costa Mesa, California: http://www.realhelpnowconference.org/west/register/

Register for Real Help Now Midwest on November 8th in St. Paul, Minnesota:

http://www.realhelpnowconference.org/midwest/registration/

Click here to print out or post our conference flyers. Share them with providers in your area, post them on your social media sites and help TACA reach more families so that their children can be helped to be as healthy as possible.

The Perfect Outfit

July 21, 2014

Janice Kern, TACA Mom and Dang Chic

Charlie karate kick butt

There was a special event planned for a particular evening. As with most special events, I wanted to pick an outfit for the occasion. Fortunately, a package had arrived several days before so I didn’t have to think too hard about what to wear.

The occasion was our son, Charlie’s, junior Black Belt TaeKwonDo test. He started TaeKwonDo at the age of 8. He required special one on one instruction from very devoted teachers due to the many challenges brought about by autism. After the first 15 minute session, we were hopeful that he would be invited back. We knew the instructor might determine that this was a challenge too great to take on. We were thrilled with the invitation to bring him back for another class. It was a huge effort each class. Charlie earned his white belt (first belt level) along with his special uniform and we were happy. We thought maybe that would be the end of Charlie’s TaeKwonDo career. We were very thankful when the instructor let us know to bring Charlie back for another session. In order to earn his orange belt, he needed to take a test. It was a huge challenge. He cried through most of the test. He needed to wear a snowboot in order to break his first board. But he got through the test and we were proud of him. He wasn’t proud at all. He couldn’t get over the anxiety of the experience. But we continued to another session of private 1:1 taekwondo classes. Several more belts were earned similarily to the orange belt. There was a lot of anxiety and tears. However, in the last 2 years, Charlie has made a leap in progress and the anxiety and tears have been less frequent. A year ago, it was determined that Charlie would be given the opportunity to work toward testing for his junior black belt. He was able to join the regular TaeKwonDo classes with the large group of kids leading up to testing date.

Finally, it was junior black belt test day. Charlie was very well prepared. For the first time, we had marked the test date on the calendar so that Charlie knew the test was coming. In years past, this caused greater anxiety so we avoided making notes on the calendar. Charlie has 3 brothers who know very well the hard work required to get to the point of testing for junior black belt so were all excited to watch the test.

Test day arrived and I needed to be ready to be supportive of his huge effort. I also wanted to be ready to celebrate, personally, what we have given of ourselves in order for Charlie to get to this day. I wanted to dress the part.

I opened my package from Dang Chics and knew right away this shirt was perfect for the occasion. The tag on the shirt was such a great way to describe a mother whose child is affected by autism. Hot Mom, Gives A Lot, Schedule Crusher were three of my favorites. This black belt test is something Charlie has earned and worked so hard to achieve. But what I have done for him to have made this day happen makes me feel like one tough dang chic. We have met and come to know many people who have helped Charlie along the way but we’ve also met plenty who didn’t share in our hope for Charlie’s future. Wearing “Dang Hopeful” on my sleeve while watching Charlie perform the required moves, kicks, oral recitations and board breaks was absolutely the best outfit I could find for the occasion.

Dang Chics has created a T-shirt especially for moms like me. I like it so much and I love that a percentage of sales goes back to the organization that keeps helping our family: Talk About Curing Autism. There are other businesses that support TACA and that’s why you will see me wearing Oakley sunglasses on my sunny days (while I’m wearing a TACA shirt) and purchasing supplements from the companies that give back to TACA. These amounts just from my few purchases add up to a small amount. But for all the Dang Chics out there, this adds up to helping families. Like mine.

Charlie passed his test. He is now a junior black belt. And in all the pictures from that special day, I proudly have ‘Dang Hopeful’ on my sleeve.

 

 

Reference:

http://www.dangchicks.com/product/new-arrivals/dang-hopeful-autism-short-sleeve-tee/

Update: Stem cells and autism

July 14, 2014

in the news

By Lisa Ackerman

As promised, we stated we would update you on the latest in stem cell research. We have written about Dr. Chez’s stem cell study in past TACA blogs (1.)

As a reminder, we know stem cell therapy offer treatment solutions for many other conditions (such as leukemia, lymphoma and other serious medical issues.) An FDA pilot study will look at stem cell therapy from cord blood & autism as a possible solution for treatment. The timeline for this pilot study is 1-2 years. Dr Chez’s study initial results should be out sometime before the end of 2014.

A new study is about to launch at Duke University with lead investigator Joanne Kurtzberg are trying to find out whether stem cells taken from frozen cord blood can improve autism symptoms (2.) Experts caution that the trial is premature. Here is what they had to say:

Early animal studies have shown that stem cells isolated from umbilical cord blood can stimulate cells in the spinal cord to regrow their myelin layers, and in doing so help restore connections with surrounding cells3. Autism is thought to result from impaired connectivity in the brain. Because of this, some groups of children with the disorder may benefit from a stem cell transplant, Kurtzberg says.
But others are skeptical of the approach. Autism is a complex disorder with many possible causes. Also, it’s unclear how stem cells derived from cord blood can improve connections in the brain. Given these important caveats, it’s too soon to conduct a test of this scale and investment, some experts say.
“It’s probably premature to run large trials without evidence that they have a therapeutic effect that [we] understand,” cautions Arnold Kriegstein, director of the Broad Center of Regenerative Medicine and Stem Cell Research at the University of California, San Francisco.

We will be watching new developments on both studies referenced in this blog and share the updates with our members. We are excited about the potential of stem cells for candidates who can benefit from this procedure. There is still so much to learn before this is a readily accessible, insurance paid procedure for those in need.

research

References:

1) http://tacanowblog.com/2012/10/08/stem-cell-update-in-the-news/ and http://tacanowblog.com/2012/09/05/stem-cells-and-autism/
2) http://sfari.org/news-and-opinion/news/2014/experts-balk-at-large-trial-of-stem-cells-for-autism

TACA Facts – tips for families living with autism

July 9, 2014

TACA Facts – a new series in collaboration with AUTISM LIVE

We are very excited about a new video series in collaboration with our friends at Autism Live. In this blog there are four new shows to share with families and answers to their frequently asked questions.

TACA FACTS autism-live-logo

 

Introducing: TACA Facts

This is an introduction to our new series “TACA Facts” sponsored by Autism Live. We’ll answer the most common questions for families living with autism in 2-3 minute segments.
What the introduction here: https://www.youtube.com/watch?v=_XvvOhr5br0

 
   
TACA Fact: Can children with autism recover?
https://www.youtube.com/watch?v=UPbshoOaBG0
Show references:

- NIH 2013 autism recovery study: http://www.nih.gov/news/health/jan2013/nimh-15.htm

- Family stories: https://www.tacanow.org/family-stories/

 
TACA Fact: How do I know if a treatment is working?

http://www.youtube.com/watch?v=dHTO6H7-xW0&list=PLzpc1lUvttW9p3hfqDE4f885Xcuo8b7oa 

Show references:

– It is important to document. Tips on how to document and perform an ATEC test: https://www.tacanow.org/family-resources/autism-evaluation-checklist/
– Documentation samples: https://www.tacanow.org/family-resources/sample-daily-calendar/

   

TACA Fact: Why aren’t Autism Treatments covered?
http://www.youtube.com/watch?v=KC_WCt3qFAc&index=6&list=PLzpc1lUvttW9p3hfqDE4f885Xcuo8b7oa

Show references:
- Who pays for what? https://www.tacanow.org/family-resources/who-pays-for-what-a-guide/
- Insurance Reimbursements: https://www.tacanow.org/family-resources/health-insurance-coverage-on-a-budget/
- On a budget series: https://www.tacanow.org/family-resources/autism-on-a-budget-series/
- American Academy Pediatric Standard of Care for Autism:
https://www.tacanow.org/family-resources/aap-standards-of-care/
 

 

 

TACA Fact: Why are Specialists so expensive?
http://www.youtube.com/watch?v=k_OhYXBptjU&index=5&list=PLzpc1lUvttW9p3hfqDE4f885Xcuo8b7oa

Show references:
- Who pays for what? https://www.tacanow.org/family-resources/who-pays-for-what-a-guide/
– Insurance Reimbursements: https://www.tacanow.org/family-resources/health-insurance-coverage-on-a-budget/
- On a budget series: https://www.tacanow.org/family-resources/autism-on-a-budget-series/
- How to prepare for an appointment: https://www.tacanow.org/family-resources/how-to-prepare-for-a-maps-doctor-appointment/
- Things you can do before your appointment: https://www.tacanow.org/family-resources/what-can-i-do-before-seeing-a-maps-doctor/
 
   
TACA Fact: What are the top 3 mistakes autism parents make?
http://www.youtube.com/watch?v=MOeBKdiBIvA&index=4&list=PLzpc1lUvttW9p3hfqDE4f885Xcuo8b7oa

Show references:
- Autism Journey Blueprints: https://www.tacanow.org/family-resources/autism-journey-blueprints/
- Find a meeting near you: https://www.tacanow.org/local-chapters/
- Get support: https://www.tacanow.org/contact/
- Find a free parent mentor: https://www.tacanow.org/about-taca/parent-mentor-program/
 
 
TACA Fact: How do I get My Partner on board?

http://www.youtube.com/watch?v=cWdRLDvwEE8&index=3&list=PLzpc1lUvttW9p3hfqDE4f885Xcuo8b7oa

Show references:
– Staying connected: https://www.tacanow.org/family-resources/after-the-autism-diagnosis-staying-connected-as-a-couple/

 
   

TACA Fact: There are no specialists near me!
http://www.youtube.com/watch?v=0QyPMRz0gfo&index=2&list=PLzpc1lUvttW9p3hfqDE4f885Xcuo8b7oa

Show references:
- Traveling tips: https://www.tacanow.org/family-resources/traveling-with-your-children-with-asd/
- Find a free parent mentor: https://www.tacanow.org/about-taca/parent-mentor-program/
- Ask for recommendations from other families like yours: Private TACA USA Yahoo Group www.groups.yahoo.com/TACA-USA (membership required)
 

This is the Autism Live landing page where we will share all future program segments: http://www.youtube.com/playlist?list=PLzpc1lUvttW9p3hfqDE4f885Xcuo8b7oa

 

Other future TACA FACTS topics include:

  • What if my child is a non-responder?
  • Talk to me about puberty.
  • I’ve done everything, now what?
  • What are some exciting new treatments?
  • Everything costs money! HELP!

Please remember: TACA is a parent support organization that provides free information and resources to families. Talk About Curing Autism (TACA) provides general information regarding medical research, treatment options, therapies and nutrition to the autism community. The information comes from a variety of sources and is not independently verified by TACA. Nothing presented in print or at meetings should be construed as medical or legal advice. Always consult your child’s doctor and therapy team regarding his or her individual needs.

Got a question? Please send it to lisa@tacanow.org

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