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Miles for Mikey Benefitting the Michael Stolzenberg Rehabilitative Trust

Wed, 12 Nov 2008 15:49:52 GMT

Miles for Mikey benefitting the Michael Stolzenberg Rehabilitative Trust

Miles for Mikey
Walk-a-thon

Please make checks payable to "the Michael Stolzenberg Trust" and mail to 1840 Main Street, Ste 202, Weston, FL 33326

Sponsor Levels
Superbowl $2,500
Touchdown $1,000
Field Goal $500
Safety $250
Extra Point $100
Sack $50
First Down $10
Audible (other amount)

For more information,
please visit
www.MichaelStolzenbergTrust.org
On July 22, 2008, Michael Stolzenberg was rushed to the emergency room with a bacterial infection that was not responding to antibiotics. Shortly after he arrived, he went into septic shock and the doctors were forced to put him on a ventilator. His condition quickly worsened to the point of hopelessness, and as a last ditch effort, he was put on continuous dialysis. The doctors and nurses at Joe DiMaggio's Children's Hospital made heroic efforts over the next seven weeks to keep Mikey alive.

Miraculously, Mikey survived with his intelligence and wit; however, oxygen depravation to his limbs has resulted in the amputation of both hands and both feet. Mikey will have to live with the results of his illness for the rest of his life. At this point, it is unknown whether Mikey will be able to write, use a computer or even feed or dress himself, much less participate in the every-day normal activities that he so enjoyed prior to his illness. Up until July 22nd, Mikey was an avid athlete and had just earned the starting quarterback position on his pee wee tackle football team; he also enjoyed playing lacrosse, riding his bike and all of the other activities most 8-year-olds thrive on.

Michael's only hope of regaining some independence and normalcy in his life is to have superior prosthetics. The prosthetics that will allow him to participate in physical activities and to take care of himself in any manner are not the type approved by health insurance. While many amputees can survive with the basic prosthetics covered by insurance, they are usually only faced with one amputation, not four. Compounding the issue is that Michael is only 8, and the four prosthetics will need to be replaced bi-annually as he grows. This is not a task for any one family to face alone.

Mikey dreams of walking and running again, of being able to feed himself, and having some independence and quality of life. Please help us make all of Mikey's dreams come true! There are no limits!

Miles for Mikey
THERE ARE NO LIMITS!

Help Mikey re-gain his quality of life by walking for him, making a donation to the Trust, or by getting others you know to donate! Keep this email going by forwarding to all you know.

SATURDAY. DECEMBER 6, 2008
TEQUESTA TRACE PARK
WESTON, FLORIDA
10:00 AM

for additional information contact
Starr Adams at starrjoe@aol.com
Renee Rheingold at renee@marcrheingold.com
Sharon Truske at struske@myacc.net

Neat Study - Smartphone to Enable Communication/Autism

Sat, 11 Oct 2008 16:04:04 GMT

By cfudge on Oct 11

Using Smartphones to Enable Interaction and Communication with Children with 
Autism
http://communicationautism.com/index.php?pag=project

FAU July CARD Events - Be sure to register in advance!

Tue, 01 Jul 2008 10:11:25 GMT

By cfudge on Jul 1

visit us online at: www.coe.fau.edu/card

FAU CARD E-BULLETIN JULY 2008

REGISTRATION IS REQUIRED FOR ALL EVENTS.

ALL GROUPS OR TRAININGS ARE SUBJECT TO CANCELLATION DUE TO LACK OF REGISTRATION.

FAU CARD is going green. All materials & newsletters will be provided electronically. Thank you for your support.

“Florida’s First Choice for Autism Support”

Boca

Registration is required for all events: 561-297-2055 or dchanan@fau.edu

• Support Group for Adults with Asperger Syndrome: (Ages 18 and up): 7/21/08, 7-9:00pm, ED 411

• Support Group for Teens with Asperger Syndrome: 7/17/08, 5-6:00pm, ED 411

• Parent Support Group: 7/12/08, 10-11:00am, ED 411

• Sibshop: 7/12/08, 10-11:00am, ED 411

• Kids Club: 7/31/08, 5-6:00pm, ED 411

• Introduction to Autism and Related Disorders: 7/24/08, 6-8:00pm ED 411

• Behavior Basics: 7/16/08, 10am-12:00pm, ED 411

• IEP Preparation: 7/22/08, 6-8:00pm, ED 411

Jupiter

Registration is required for all events: 561-297-2055 or dchanan@fau.edu

• Parent Support Group (Guest Speaker- Dr. Kye, M.D., P.A.): 7/17/08, 6-7:30pm, SR 272

Dr. Kye is a Diplomate in Child and Adolescent Psychiatry by the American Board of Psychiatry and

Neurology and has a private practice in West Palm Beach.

• Support Group for Teens with Asperger Syndrome (Ages 12-18): 7/17/08, 6-7:30pm, SR 290

Port St. Lucie

Registration is required for all events: 772-873-3425 or agganis@fau.edu

• Mommy & Me: 7/17/08, 9-10:00am, CO 141

• Support Group for Adults with Asperger Syndrome: 7/31/08, 7-8:30pm, Pool Room

• Family Support Saturday: 7/19/08, 10am-12:00pm, Parent Networking SL 114, Sibshop SL 102, Kid’s Club

SL 101, Teen Group Pool Room

• Introduction to Autism & Related Disabilities: 7/31/08, 7-8:00pm, CO 139

• Evidence-Based Practices in Autism: 7/16/08, 6-8:00pm, CO 139

• Behavior Basics: 7/30/08, 10am-12:00pm, CO 141

Wellington

• Parent and Teen Support Groups: 7/7/08, 6-7:30pm, Wellington Library (Parent Guest Speaker: Dr. Kye,

Social Skills/Pragmatics Materials - Link to Great Resource/Music Therapy

Mon, 30 Jun 2008 11:50:20 GMT

By cfudge on Jun 30

I recently shared this with a teacher who asked that I post it in the forums for reference. This is a wonderful resource for teachers/therapists/or even parents who may running play dates and are trying to teach social skills.

Tuned Into Learning - (appropirate for PreK to 7)

The songs are very catchy and is accompanied by wonderful visuals. You can order it from Super Duper Learning - http://www.superduperinc.com/TUV_Pages/tnl01.htm

It might be a great gift for a teacher at the beginning of the year to use during circle times to focus on friendship development and appropriate classroom behaviors (I should ask super duper for a job!)

Anyway, great resource...

Re: Pediatrician Suggestion in Jupiter -

Fri, 27 Jun 2008 12:41:30 GMT

By cfudge on Jun 27

Thank you; I will pass this information on. Charlotte

Re: More suggestions

Thu, 12 Jun 2008 21:52:41 GMT

By cfudge on Jun 12

Those are great suggestions Tara. Once the student shows progress with that intervention, I would also focusing on teaching him to self manage the behavior as he is 14 years old. For example, you could teach him to take data on whether or not he engages in the behavior (i.e. each time the timer goes off he records +/-) and assist him in establishing his own contingencies (i.e. "if I earn 10 + then I get to...").

Re: MIND Institute Research on Anti-Bacterial Soaps (Triclosan) and Autism

Thu, 12 Jun 2008 21:45:04 GMT

By cfudge on Jun 12

Yikes! I am throwing those out immediately...What is safe anymore!!!

Pediatrician Suggestion in Broward

Mon, 02 Jun 2008 16:21:34 GMT

By cfudge on Jun 2

A client gave me this advise....A pediatrician will normally space out the vaccination schedule if you ask - just let them know that you are okay with making a lot of extra trips to their office. Dr. Mitchell Samuels is a good Broward Ped for those of you who were asking for recommendations.

Re: Aggressive Behavior in 5 yr old

Fri, 23 May 2008 10:05:41 GMT

By cfudge on May 23

Have you talked to them about why they are engaging in the behavior? Take some time to look at the events surrounding the behavior. For example, what happens before and what happens afterwards. This will yield some clues as to what the behaviors function is and then how to go about addressing it. It could be happening as the resulting from fear/anxiety in social situations, attention from you, escape from undesirable situations, etc.

Re: Gluten-free and Casein-free

Fri, 23 May 2008 10:02:24 GMT

By cfudge on May 23

Thank you for sharing your post about your experience. I know that many times doctors just recommend doing an elimination diet on a trial basis to assess results/outcomes. Did your doctor perform any lab work in advance to decide to take the gfcf path?

Re: DAN protocol?

Fri, 23 May 2008 10:00:07 GMT

By cfudge on May 23

Specifically what type of doctor are you looking for? Someone to provide nutritional therapy, chelation, etc.? The reason I ask as there are quite a few doctors I work with that provide services that DAN recommends, but are not specifically DAN doctors.

Re: Florida Autism Spectrum Disorder Legislation – Key Components – Autism Insurance Mandate

Fri, 23 May 2008 09:57:38 GMT

By cfudge on May 23

Thank you so much Richard for taking the time to share this information with us. I can't begin to explain to you how helpful this is to both providers and families.

Question: Is the Medicare Waiver for Developmental Disabilities something totally separate from the Medicaid Waiver for Developmental Disabilities? I know that the Medicaid Waiver is now cutting services/reimbursement rates for all providers.

Charlotte

Urge YOUR Representative to Support the Sestak Amendment!

Mon, 19 May 2008 16:41:10 GMT

By cfudge on May 19

Autism Votes... It's time for lawmakers to listen.

Congressman Joe Sestak (PA-7) has introduced an amendment to the National Defense Authorization Act that will help military families with an individual with autism receive additional funding for Applied Behavior Analysis (ABA) services. This amendment will raise the monthly cap for ABA therapy from $2,500 to $5,000 a month.

Why Should YOU Take Action? Passage of this amendment is not just important to military families, though. Providing increased funding for autism therapies for military families will have far reaching effects for non-military families who are currently fighting for autism insurance reform in many states accross the country.

Action Needed:

1. CALL YOUR Congressional Representative and encourage their support for the Sestak Amendment to the National Defense Authorization Act! Not sure who to call? Find out HERE!

Make sure you let them know that you are THEIR constituent
Let them know if you are member of a military family
If you are not a member of a military family, PLEASE still make this call and let them know how important passage of this amendment is to you, YOUR family, and the millions of families across the country struggling to cope with the financial burdens of autism without ANY help from private insurance!

2. Click to EMAIL YOUR Congressional Representative with the same message! The email is all set up. All you need to do is type in your address, add your own words (optional) and hit send!

Thank you for taking action on this important issue!

Elizabeth Emken
Vice President, Government Relations
Autism Speaks

ASD - Environmental Variables Symposium

Fri, 09 May 2008 21:21:36 GMT

By cfudge on May 9

Check it out!

http://kc.vanderbilt.edu/kennedy/marisymposium/

Re: Florida Autism Spectrum Disorder Legislation - Self Insured / Self Funded Plans

Wed, 07 May 2008 16:41:17 GMT

By cfudge on May 7

Your postings are great Richard. Thank you so much for taking the time to educate us all :-) I just got an email from Autism Speaks that the bill is off to the governors desk for signature. How long will this take to go into effect? What is the total number of people that this bill with apply to?

“Is your child Autistic? Experiencing severe irritability and tantrums?”

Mon, 28 Apr 2008 15:46:53 GMT

By cfudge on Apr 28

If so then your child may be eligible for a study investigating an FDA approved medication for the treatment of severe irritable, aggressive, self-injurious behaviors.

Participation in the study includes, at no charge:
Diagnostic testing for Autism (Asperger’s, PDD NOS, etc not included in this trial)
IQ testing for mental age confirmation of 18 months
Laboratory & ECG testing
Psychological testing to evaluate the efficacy of the medication

The study may last up to six months and include free study medication and consultations with a Behavioral Pediatrician who specializes in Autism and other behavioral disorders in children.

If interested in setting up an appointment for screening,
Please call HSA at 561-674-5290
Or you may email us at: healthsciencesamerica@gmail.com

Please visit our website for more information:
www.healthsciencesamerica.com

Senate Bill 2654, the autism insurance reform bill, has JUST PASSED THE FL SENATE UNANIMOUSLY!!

Wed, 23 Apr 2008 20:27:11 GMT

By cfudge on Apr 23

Autism Votes... It's time for lawmakers to listen.

Dear Florida Autism Advocate,

We're almost there!! Due to the hundreds of emails you sent to members of the Florida Senate over the past few days, Senate Bill 2654, the autism insurance reform bill, has JUST PASSED THE FL SENATE UNANIMOUSLY!! Not only that, but the bill has also been certified by the Senate to the House, meaning the House could vote on it at any time. All that is needed now is for Florida House Speaker Marco Rubio to bring the Senate Bill up for a vote in the House!

How Can You Help?

1. CALL Speaker Rubio's office! Let the Speaker know that the bill was passed UNANIMOUSLY in the Senate and, while you appreciate the efforts of the Select Committee on Autism & Developmental Disabilities, families in Florida REALLY NEED PRIVATE HEALTH INSURANCE COVERAGE FOR AUTISM SERVICES! Urge the Speaker to bring SB 2654 up for an immediate vote in the House.

Call Speaker Rubio at (850) 488-1450

2. Follow up your call with an EMAIL to Speaker Rubio with the same message: Schedule a House Vote on the UNANIMOUSLY passed Senate Bill 2654!

We are so close to getting the health coverage Florida's kids with autism need.

Thank you!

Shelley Hendrix

Director of State Advocacy Relations

Autism Speaks

Re: Autism Votes... Senate Bill 2654

Mon, 21 Apr 2008 20:21:25 GMT

By cfudge on Apr 21

Dear Florida Autism Advocate,

We have been making good headway in the Florida House on HB 1291. Now we need to work on our State Senators. Senate Bill 2654, which is identical to HB 1291, NEEDS TO PASS in order for autism insurance reform to become state law! The Florida State Senate will be voting on this bill on Wednesday or Thursday of this week and we all need to MAKE SURE THEY VOTE YES!!

WHAT CAN YOU DO TODAY?

1. CALL YOUR STATE SENATOR. Don't know who your state senator is? Simply visit the Resources page of the Autism Votes website, type in your address, and you can find out who your state senator is and the phone number you need to MAKE THE CALL TODAY!

2. EMAIL YOUR STATE SENATOR urging him/her to vote YES on SB 2654!

3. FORWARD THIS EMAIL ALERT to your friends and family and get them to Take Action for Florida too!

Autism Speaks is committed to the principles of House Bill 1291. We are disappointed in what we have seen so far proposed by the Speaker's Special Committee, and we remain fully engaged in improving the proposed bill. Let’s focus on the Senate right now, and stay tuned for more information on the House bill in the coming days.

Thank you!

Shelley Hendrix
Director of State Advocacy Relations
Autism Speaks

Re: Big Darn Words - Biomedical/Diet Specific

Wed, 16 Apr 2008 16:41:36 GMT

By cfudge on Apr 16

The diets definitely can be confusing - there are so many... GFCF, Specific Carbohydrate, Body Ecology, Feingold, etc. However, after lots of research and implementation with my own son, I do find that they carry many of the same principles and if implemented step-by-step can have profound impacts.

The best place to start if you are considering nutritional interventions is with a consult with someone who is qualified/knowledgable on the subject matter. I suggest checking out the BioBalance Program. The program will provide you with the information necessary to help you decide what/how/when to make dietary changes.

Check it out:

http://www.butterflyeffects.com/services/bio-balance-program.aspx

Re: Toys for Autism

Wed, 16 Apr 2008 16:31:20 GMT

By cfudge on Apr 16

Super Duper Learning has an amazing supply of quality educational products and some toys; http://www.superduperinc.com. Oriental Tradings has just started carrying educational toys and products as well, orientaltrading.com.

What kind specifically are you looking for?

Autism Votes... It's time for lawmakers to listen.

Wed, 16 Apr 2008 16:26:53 GMT

By cfudge on Apr 16

Autism Votes... It's time for lawmakers to listen.

Dear Florida Autism Advocate,

The autism insurance reform bill sponsored by Representative Ari Porth, HB 1291, needs your attention once more. To date, only 44 out of 120 Representatives have stepped up to the plate to cosponsor this legislation for your families and your children. We made significant gains yesterday in gathering cosponsors for this bill, but still have a ways to go to reach our goal of 61 cosponsors!

HB 1291 is a fiscally responsible, common-sense approach to providing families with children with autism with financial relief and the ability to provide the medically necessary, evidence based treatments that their child's doctors have prescribed.

WE NEED 17 MORE REPRESENTATIVES TO SIGN ON BY THE END OF THE DAY TODAY. THAT'S ONLY 3 PER HOUR! LET'S GO Get 'EM!

ACTION NEEDED: What can you do to help?

1. Pick up the phone and CALL, CALL, CALL! All day today. Ask your neighbors, coworkers, and anyone else you know to call their representatives to urge them to sign onto HB 1291. We are very close and with enough noise at the Capitol, this could become a reality, soon.

Go to the Autism Votes, Resources page to find the name and phone number for YOUR FL State Representative.
Check out this list of State Representatives that HAVE NOT YET cosponsored HB 1291. If you see your Representative on this list, MAKE A CALL TO HIM/HER TODAY!

2. Follow up with an EMAIL to the FL State Representatives not yet cosponsors of HB 1291.

3. To find out more information on HB 1291 go to www.autismvotes.org/florida.

Again, we only need 17 more sponsors for the bill to be able to pass so please take five minutes to make those calls and send those emails. Spread the word.

Autism Votes - It's time for Lawmakers to listen!

Thanks!

Shelley Hendrix
Director of State Advocacy Relations
Autism Speaks

Re: Bill does not cover companies that self insure

Wed, 16 Apr 2008 16:26:05 GMT

By cfudge on Apr 16

wow! i did not realize that...nor do I think anyone else did. so what benefits would the bill passing then bring?

IVIG - Transient hypogammaglobulinemia of infancy

Wed, 09 Apr 2008 17:06:04 GMT

By cfudge on Apr 9

Information for those receiving IVIG shared with from a client, currently waiting for the references from which she obtained this information....

Transient hypogammaglobulinemia of infancy

Although most IgG deficiencies are inherited defects, transient hypogammaglobulinemia appears to be an acquired defect resulting from a delayed onset of IgG synthesis.

Infants transplacentally obtain maternal IgG antibodies during the third trimester of gestation. Because the biologic half-life of IgG is approximately 21-28 days, the lowest levels of infant serum IgG are attained by postnatal months 2-4.

In some infants, this physiologic drop of serum IgG concentration is prolonged, sometimes for as long as 17-19 months in full-term infants and 36 months in premature infants. During this time, the infant is susceptible to recurrent bacterial infections, and the condition is referred to as transient hypogammaglobulinemia of infancy. Fortunately, this type of immunodeficiency often resolves spontaneously by age 4 years, and affected infants do not usually require IgG replacement.

Transient hypogammaglobulinemia of infancy is an immunodeficiency disorder in which antibody production by an infant is delayed.
At birth, the immune system is not fully developed. Most of the antibodies in infants are those produced by the mother and transferred via the placenta before birth. Antibodies from the mother protect infants against infection until infants start to produce their own antibodies, usually by age 6 months. Infants who have transient hypogammaglobulinemia of infancy do not start producing antibodies until later. As a result, antibody levels become low starting at age 3 to 6 months and return to normal at about age 12 to 36 months. This disorder is more common among premature infants, because they receive fewer antibodies from the mother. Although the disorder is present at birth, it is not hereditary.
Most infants with the disorder have some antibodies. Therefore, they do not have a problem with infections and need no treatment. However, some infants, particularly those born prematurely, develop infections frequently. Immune globulin can prevent and help treat infections. It is usually given for about 6 to 12 months. Antibiotics are given when needed. Lifespan is unaffected.

MANAGEMENT:

1. Supportive
in mild to moderate cases, moniter immunoglobulin levels every 3 to 4 months
important to rule out other permanent immunodeficiencies

2. Intravenous Immunoglobulin (IV IgG)
indicated in patients with severe recurrent infections
replacement for 12-36 months
discontinue when there is evidence of in vivo IgG synthesis

3. Prognosis
self limiting with recovery between 18-48 months of age
excellent prognosis with onset of normal IgG synthesis

Re: Autism Bill - PAY ATTENTION - APRIL 10th!!!!!

Wed, 09 Apr 2008 17:03:18 GMT

By cfudge on Apr 9

Autism Votes... It's time for lawmakes to listen.

Dear Florida Advocate,

Tomorrow, Thursday, April 10th is a HUGE day in Tallahassee for the autism insurance reform movement!

As you know, Senate Bill 2654, which will require insurance companies to provide coverage for autism-related services, including applied behavior analysis (ABA) therapy, will be heard before the Florida Senate Health & Human Services Appropriations Committee tomorrow afternoon (April 10) at 2:30 p.m.

Please continue with your phone calls and emails with regard to the alert we sent out yesterday. Express your thanks for the demonstrated leadership of the Senate, the Speaker, and the Governor on this issue, as well as your concerns and your requests to have them support this legislation. Visit www.autismvotes.org/florida for more information and links to Florida TAKE ACTION opportunities.

Additionally, the Speaker's Select Committee on Autism and Developmental Disorders will be meeting Thursday night, April 10th from 5:30 pm until 7:30 pm in room 408 of the House Office Building to continue discussions regarding this issue.

At the meeting, there will be an opportunity for public comment. This is your chance to speak up and be heard!

How can you help on Thursday, April 10th?

Our community definitely needs to pack the rooms for both of these events and especially the evening meeting for the House Select Committee. If you are within a couple of hours driving distance of Tallahassee, we need you to provide a physical presence for those elsewhere in the state that cannot travel the distance to be there in person.

Keep up the hard work and keep the pressure on! We are nearing the home stretch!

The University of Miami- Nova Southeastern University Center for Autism and Related Disabilities is

Wed, 09 Apr 2008 16:49:13 GMT

By cfudge on Apr 9

The University of Miami- Nova Southeastern University Center for Autism and Related Disabilities is hosting their second FREE family concert on April 13, 2008 from 3-4:30 at the JCC in Cooper City. Attached you will find the flyer with all necessary details. This concert is for the whole family and will provide the opportunity for participants to play instruments, dance, and express their love of music in their own way.

Please pass this information along to the families and individuals with autism spectrum disorders you work with. We have approximately 200 seats still available for this event.

RSVP’s for the event are done on-line at www.insyncwithautism.com. For more information, please feel free to call me.