In this issue we re-print a poster from the 9th
World Down Syndrome Congress: Language Impairment Is Associated With Decreased Plasma Coenzyme Q10 Levels in Children With Down Syndrome
followed by a supporting journal abstract, and report news of a disturbing footage, filmed with a camera phone by students in a Turin, Italy high school, of a teenager with Down syndrome being bullied and watched by 15 more without protest. The students and the teacher, absent at the time of the bullying but responsible for the class, are being investigated.
Mark your calendars for the DSAGSL Family Conference, 30 Years of Building a Better Life
, Saturday, March 10 from 8:30 - 4:15 at Clayton High School, #1 Mark Twain Circle, Clayton, MO 63105. There will be two concurrent conferences - one for teens and one for adults with Down syndrome.
We are sad to share the death of Patricia "Trisha" Higgins Vaughn (1/10/1954 - 8/17/2006). She was Program Director at William M. BeDell Achievement and Resource Center. My son Emmanuel was one of the many lives she touched.
The Alton Telegraph, Letter to the Editor
. Sep. 2006.
Recently our agency lost a close friend and a valuable employee. Trisha Vaughn died Aug. 17 after a four-year battle with cancer.
My reason for writing is to express my gratitude and our staff's gratitude for having had the opportunity to work with and learn from Trish.
Trish spent nearly 30 years with the William M. Bedell Achievement and Resource Center, working with infants and their parents after learning that their babies might have delays or disabilities. Often, Trish would be responsible for informing the young parents what to expect, and often the more difficult what not to expect, for the child's future. Trish was soothing in the manner in which she worked with families and assisted them at home visits to overcome obstacles.
She was responsible for the development and growth of hundreds of children over the years. She was always quiet, gentle and unassuming, but she was a powerful force in the early intervention system and she was relentless in assisting families to overcome the challenges they faced with their infants.
We do not find many people like Trish, but when we do, it is our good fortune to be able to say she was a colleague and a friend. We are grateful to have known her. She touched many lives, and she will be missed by those close to her.
William M. BeDell Achievement and Resource Center
Governor Blagojevich Signs Down Syndrome Awareness Proclamation. Date: September 20, 2006. Contact: Jennifer Paganessi, (815) 439-8693.
Governor Blagojevich today signed a proclamation marking October as Down Syndrome Awareness Month in Illinois.
The text of the Governor's proclamation is as follows:
Whereas, approximately one in every 733 children are born with Down syndrome, representing approximately 5,000 births per year in United States; and
Whereas, while research and early intervention have resulted in dramatic improvements in the lifespan and potential of those who are affected, more investigation is needed in the causes and treatment of Down syndrome; and
Whereas, people with Down syndrome possess a wide range of abilities, and are active participants in educational, occupational, social, and recreational circles of the community; and
Whereas, developed by the National Down Syndrome Society in 1995, the Buddy Walk is an annual event in cities across Illinois and the nation celebrating the accomplishments of children and adults with Down syndrome; and
Whereas, DS Support has supported families who have children with disabilities, and special healthcare needs for 6 years in Illinois and desires to increase the support network and support groups of those with Down syndrome across our state; and
Whereas, the goal of the Buddy Walk is to promote increased understanding and acceptance of people with Down syndrome, while raising funds for scientific research into the causes and treatment.
Therefore, I, Rod R. Blagojevich, Governor of the State of Illinois, do hereby proclaim October 2006 as Down Syndrome Awareness Month in Illinois, and encourage all citizens to work together to promote awareness of Down syndrome and to celebrate the accomplishments of these individuals and their families
January 13, 2007, 9-11 a.m. Understanding the IEP Process. Presenter: Ann Stackle, Parent Mentor Coordinator for MPACT. Your child's IEP is the cornerstone of their education. This workshop offers an in-depth look at the evaluation process, qualifying for an IEP, the many components that must be addressed in the IEP document, as well as how progress will be monitored. As a result of this training, parents will gain a better understanding of their role as an equal participant in the IEP Process.
February 10, 2007, 9-11 a.m. What NOT to Expect at an IEP: Understanding Education Law and Regulations-the IDEA, Section 504, FERPA and the ADA. Presenter: Dayna F. Deck, Attorney at Law. Have you been to an IEP meeting and had a school district representative give you a multi-page document called "Procedural Safeguards." Was it passed across the table to you as if it has poison on it? Did anyone review the document with you and tell you what your rights are? Probably not. I will review the different federal laws that apply to children with disabilities and discuss parent rights and what you have to do to make sure your child gets an appropriate education. Some of the topics covered will be: least restrictive environment, due process, mainstreaming, continuum of placements and others. I will allow plenty of time for questions.
If you have further questions concerning the seminar series or the Educational Resources Team, you may contact Shana Meyer at firstname.lastname@example.org or Ginny Colten-Bradley at email@example.com or the Down Syndrome Association of Greater St. Louis at (314) 961-2504.
PASS? Say What? Say What? Future Planning in Plain English, Vol. 2, No. 6, June 15, 2005 by Alexandra Conroy, Future Planning for Families with Special Needs. Waddell & Reed, Inc., One Oak Hill Center, Westmont, IL 60559. (630) 789-0044. Fax: (630) 789-8005.
This publication is for information only. Before making any financial decisions, please consult your benefits specialist, financial advisor or attorney.
What is a PASS?
The Ticket to work program includes a mechanism for people with special needs to accumulate resources in order to purchase the training or assets needed to support or increase their employment opportunities. For instance, you could set aside money to pay your tuition for a vocational course or skills certification program, or for computer training or to buy a computer or to purchase a piece of equipment or a vehicle or as 'seed' money to start your own business.
This mechanism is called a Plan for Achieving Self-Support (PASS). Resources accumulated inside a PASS do not count towards the $2,000 asset limit on eligibility for Supplemental Security Income (SSI). Also, the Social Security Administration does not consider Income that is redirected to a PASS accumulation program when calculating your SSI payment. If you work and earn too much income to qualify for SSI and especially if you would like to save a portion of that income to pay for vocational development, you could become eligible by creating a PASS for yourself. If you are self-employed or your employment level varies from month to month, a PASS can act to 'smooth' earnings to maintain SSI eligibility.
Am I eligible to make use of a PASS?
In theory, anyone may use a PASS who has a disability and qualifies for SSI or would qualify for SSI if he or she had lower earned income. In practice, if you want to make use of a PASS, you must have the initiative and motivation to develop and implement a strategy to further your vocational development and increase your earnings opportunities and potential with the eventual goal of decreasing your reliance on government benefits.
Specifically your plan must:
- Be designed for you in particular
- Include a written document (preferably using the SSA's form SSA-545-BK)
- Advance you towards a specific work goal that you can achieve
- Include a defined time-frame for completion
- Describe what money (other than your SSI payments) and other resources you have or will receive that can be used towards reaching your goal
- Describe how that money and those resources will be used
- Describe how the money you set aside in the PASS will be kept separate and identifiable from your other funds
- Be approved by the SSA and
- Be reviewed periodically to assure that your plan is actually helping you progress towards economic independence.
Who can help me write my PASS?
A PASS is an excellent way to save money to further your vocational skills and/or purchase assets to increase your employment opportunities because you can maintain or even increase your level of government benefits until those new employment opportunities bear fruit. That said, in order to obtain SSA approval, your PASS must contain sufficient data, financial projections and documentation and be written in a clear fashion.
If your PASS is geared towards starting your own business, you must attach a detailed business plan which must include at minimum:
- A description of products and services offered
- A market analysis
- An advertising plan
- A list of technical assistance, equipment and supplies needed
- A profit and loss [projection extending through the PASS time period plus one year and
- An explanation of how you intend to make your business succeed.
The fifteen-page PASS application may seem daunting-especially if this is your first attempt to produce a business proposal. Consulting a financial advisor, vocational counselor, social worker, benefits planner, current employer or other individual familiar with business planning could facilitate your plan's approval. PASS application forms can be obtained from your SSA office or can be downloaded from the SSA website: www.ssa.gov/online/ssa-545.html or from www.passonline.org.
May I use a PASS if I am still a student?
Yes, you may as long as you have a disability, work and create a plan as described above. In addition, if you are still a student, you may qualify for the Student Earned Income Exclusion. You qualify if:
- You study in college or university at least 8 hours/week or
- You study at grade level 7-12 at least 12 hours/week or
- You are in employment training at least 12 hours/week (15 hours/week if the course includes a practicum)
Study may take place in school or at home as long as the curriculum meets the above criteria and is directed by a home visitor or tutor.
If you are attend school regularly as described above, are under 22 years of age, are not married and not head of your household, the SSA will exclude up to $1,410 of earned income/month when calculating your SSI payment amount up to a maximum of $5,670/year. These amounts are for 2005. Subsequent year's amounts will be adjusted for cost-of-living.
Information on PASS taken from the Social Security Administration 2003 'Red Book' (SSA Pub. No. 64-030) and the Social Security website (http://www.ssa.gov)
9th World Down Syndrome Congress
Language Impairment Is Associated With Decreased Plasma Coenzyme Q10 Levels in Children With Down Syndrome. B.J. Patterson, M. Chalfonte-Evans, M.V. Miles, F.J. Hickey, M.B. Schapiro, P.S. Horn, and S.L. Hotze. Depts. of Pediatrics & Mathematical Sciences, Univ. of Cincinnati College of Medicine and Thomas Center for Down Syndrome, Cincinnati Children's Hospital Medical Center. 9th World Down Syndrome Congress Poster. Vancouver, B.C., Canada.
Objective: Coenzyme Q10 (CoQ10) is an important endogenous cofactor for oxidative phosphorylation and potent antioxidant. Children with Down syndrome (DS) have decreased plasma CoQ10 compared with healthy children . The current follow-up report describes a relationship between CoQ10 and language impairment in children with DS.
Materials & Methods: Twenty-two children with trisomy 21 previously participated in a CoQ10 dosing study . In this post hoc analysis, baseline plasma CoQ10 and cholesterol test results from the dosing study  were related to language impairment. Preschool Language Score (PLS-3) results for 20 participants (10 males, mean 5.1 years, range 1.7-9.3 years) were collected from their clinical records (2 were missing). Data were stratified according to PLS-3, i.e. severe (PLS-3 <70) and mild-moderate (PLS-3 =70-84) language disorder groups. P-values =0.05 were considered significant.
Results: Children with severe language disorders (n=14) have significantly lower cholesterol-adjusted CoQ10 levels than children with mild-moderate disorders (n=6), i.e. 0.19 vs. 0.25 µmol CoQ10/mmol cholesterol, respectively (P=0.021, Mann Whitney U test). Also a weak correlation exists between CoQ10 levels and PLS-3 data (r=0.44, P=0.05).
Conclusion: These preliminary findings suggest that language impairment in children with DS may be related to a CoQ10 deficiency. Because CoQ10 supplementation has been shown to provide functional and neuroprotective benefits in neurodegenerative diseases, we hypothesize that CoQ10 supplementation may improve language skills in some children with DS.
Introduction & Study Aim
- Down syndrome is a neurodegenerative disease with clinical features of Alzheimer's disease. Patients with Down syndrome have also been shown to have increased oxidative stress. According to some experts Down syndrome may be a model for mitochondrial dementia .
- A recent study indicates that children with Down syndrome have increased levels of protein carbonyls compared to healthy children . This supports the hypothesis that oxidative stress is an important factor in the pathogenesis of several Down syndrome features, including dementia, auditory deficits, and early aging.
- Coenzyme Q10 is recognized as both a potent antioxidant and an essential cofactor for mitochondrial function.
- Coenzyme Q10 supplementation may benefit certain patients with neurodegenerative, cardiovascular, and mitochondrial diseases.
- Altered endogenous coenzyme Q10 levels have been reported in neurodegenerative disorders, cancer, cardiovascular diseases, and diabetes mellitus . Low coenzyme Q10 levels may be a result of increased utilization or decreased absorption.
- We have recently reported that males with Down syndrome tend to have lower coenzyme Q10 levels in plasma compared to age-matched healthy males .
- We hypothesize that altered coenzyme Q10 levels in children with Down syndrome may be associated with the severity of impaired language function.
- To determine whether language impairment is associated with altered coenzyme Q10 levels in children with Down syndrome.
Materials & Methods
- This study was approved by the IRB of the Cincinnati Children's Hospital Medical Center.
- This is a post hoc analysis of baseline, endogenous total coenzyme Q10 levels, and language testing which had be conducted prior to the previous trial .
- 22 children with Down syndrome, who had participated previously in a coenzyme Q10 dose-ranging trial , were identified.
- Inclusion criteria:
- Previous diagnosis of Down syndrome.
- Age between 1 year and 16 years.
- No history of CoQ10 intake for 1 month prior to this study.
- Prior assessment with the PLS-3 by a speech pathologist.
- Exclusion criteria:
- Taking concurrent CoQ10 supplements other than study drug.
- History of acute or chronic disease or drug therapy, which might affect CoQ bioavailability or pharmacokinetics.
- History of gastrointestinal malabsorption of fats from a normal diet.
- Participation in another research study involving investigational drugs within 1 month prior to this study.
- Known allergy to CoQ10.
- 20 children had completed the Preschool Language Scale (PLS-3) according to their medical record.
- Language Assessment: The PLS-3 has been used to screen for speech impairment in preschool children, and to assess language skills of children with disabilities . Participants in the current study were tested with the PLS-3 at an earlier time when they were evaluated by the speech pathologist at the Thomas Center. The test is "child-friendly", can measure low levels of language ability, allows for repeated administration over a child's development, and is considered a valuable psychometric tool by many researchers .
- Laboratory testing: Plasma samples were analyzed for CoQ concentration in the Clinical Laboratory using a validated high performance liquid chromatography (HPLC) procedure with electrochemical detection .
- Statistical analysis:
- Data were stratified according to PLS-3, i.e. severe group (PLS-3 <70) and mild-moderate group (PLS-3 =70-84) language disorder groups.
- Comparisons were made using the Mann-Whitney U test.
- P-values =0.05 were considered significant.
Table. Comparison of PLS-3 study groups and age-matched healthy controls. Mean ± SD [range]
a Comparison of PLS-3 groups (Mann-Whitney U test)
|| PLS-3 Score <70 (n=6)
|| PLS-3 Score <70 (n=14)
| Sex (M/F)
| Race (W/Other)
| Total Cholesterol (mmol/L)
| Plasma CoQ10 (mol/L)
| CoQ10: Total Cholesterol Ratio (mol/mmol)
|Figure 1. Correlation between CoQ10:cholesterol ratio and PLS-3 scores in 20 children with Down syndrome.
|Figure 2. Box plot comparison of total cholesterol in children with severe language impairment (PLS-3 <70) and those with moderate or no impairment. (Mann-Whitney U test)
|Figure 3. Box plot comparison of plasma CoQ10 in children with severe language impairment (PLS-3 <70) and those with moderate or no impairment. (Mann-Whitney U test)
|Figure 4. Box plot comparison of CoQ10:cholesterol ratio in children with severe language impairment (PLS-3 <70) and those with moderate or no impairment. (Mann-Whitney U test)
- Table 1 summarizes the characteristics of the 2 study groups.
- There is a weak but significant correlation between CoQ10:cholesterol ratio results and PLS-3 data in 20 children with Down syndrome (Figure 1).
- In children with Down syndrome those with severe language disorders (n=14) have similar plasma cholesterol levels as those with no or mild-moderate disorders (n=6) (Figure 2).
- Children with severe language disorders (n=14) have significantly lower CoQ10 plasma levels than children with no or mild-moderate disorders (n=6) (Figure 3).
- Children with severe language disorders (n=14) have significantly lower cholesterol-adjusted CoQ10 levels than children with no or mild-moderate disorders (n=6) (Figure 4).
These preliminary findings suggest that language impairment in children with DS may be related to a CoQ10 deficiency. Because CoQ10 supplementation has been shown to provide functional and neuroprotective benefits in neurodegenerative diseases, we hypothesize that CoQ10 supplementation may improve language skills in some children with DS.
Permission granted by Elsevier to reprint the following abstract:
- Miles MV, Patterson BJ, Schapiro MB, Hickey FJ, Chalfonte-Evans M, Horn PS, Hotze SL. Coenzyme Q10 absorption and tolerance in children with Down syndrome: a dose-ranging trial. Pediatr Neurol 2006;35(1):30-37.
- Kidd PM. Neurodegeneration from mitochondrial insufficiency: nutrients, stem cells, growth factors, and prospects for brain rebuilding using integrative management. Altern Med Rev 2005;10(4):268-93.
- Zitnanova I, Korytar P, Sobotova H, Horakova L, Sustrova M, Pueschel S, Durackova Z. Markers of oxidative stress in children with Down syndrome. Clin Chem Lab Med 2006;44(3):306-10.
- Dhanasekaran M, Ren J. The emerging role of coenzyme Q10 in aging, neurodegeneration, cardiovascular disease, cancer and diabetes mellitus. Curr Neurovasc Res 2005;2(5):447-59.
- Zimmerman IL, Castilleja NF. The role of a language scale for infant and preschool assessment. MRDD Res Rev 2005;11:238-246.
- Tang PH, Miles MV, DeGrauw A, Hershey A, Pesce A. HPLC analysis of reduced and oxidized coenzyme Q10 in human plasma. Clin Chem 2001;47:256-265.
Pediatr Neurol 35(1): 30-7 (2006 Jul)
Coenzyme Q10 absorption and tolerance in children with Down syndrome: A dose-ranging trial
Miles MV, Patterson BJ, Schapiro MB, Hickey FJ, Chalfonte-Evans M, Horn PS, Hotze SL
Division of Pathology and Laboratory Medicine, Cincinnati Children's Hospital Medical Center, Ohio 45229, USA
Controlled studies of coenzyme Q(10) dosing and tolerance have been reported in adults, but not in pediatric patients. This study compares low- and high-dose coenzyme Q(10) (LiQ-NOL syrup) absorption and tolerance in children with Down syndrome. After a 1-month low-dose (1.0 mg/kg/day) run-in period, all participants received high-dose coenzyme Q(10) (10.0 mg/kg/day) for two additional months (in randomized sequence as one daily dose or split into two daily doses). Chemistry profiles and complete blood counts were determined just before and at the study completion. Plasma coenzyme Q(10) concentrations were determined initially and at each study visit. Parents reported adverse events and study drug evaluations using standardized forms. Most of the 16 children who completed this study tolerated high-dose coenzyme Q(10) well. Uncooperative behaviour resulted in premature withdrawal of two participants, and may have been treatment-related. Pre- and post treatment laboratory test changes were considered to be clinically nonsignificant. Study results indicate that high-dose coenzyme Q(10) (10 mg/kg/day) is well-absorbed and well-tolerated by most children with Down syndrome, and appears to provide plasma concentrations which are comparable to previous adult studies administering much higher coenzyme Q(10) dosages.
Down Syndrome Articles
He Has Up Syndrome Not Down Syndrome by Caroline Brandt. Excerpt: p.48-50. E-Mail: firstname.lastname@example.org. URL: http://www.carolinebrandt.com. ISBN: 1-4137-6041-4. Proceeds from the sale of this book go to the Sunshine School in Searcy, Arkansas to build a new school.
It's now October and Riley is about to turn 3 years old, where had the time gone?
I flew to Arkansas for the birthday party preparation. It was so great, I got off the plane and walked down the ramp to get past security where I knew Misty and the boys were waiting for me and then they saw me; and all of a sudden Riley runs up to me and jumps in my arms.
I swear I wanted to break down and get hysterical, but no, I had to keep it together so I would not scare him.
Can you believe he actually remembers me? I cannot believe it, I must have been dreaming.
Well, we were going to have his party at a Community center, Misty had reserved a room, so for snack foods, she wanted me to make my hot sauce and sandwich loaves, which was real simple with frozen bread dough, you thaw and let it rise and then make fresh type sandwiches. She also had a huge cake and ice cream and drinks.
The party was on Saturday and by 2 the place was packed with family and friends. Heather and Troy drove in and so did one of Misty's good friends, Jaime from Fort Worth. Brent's sister Lori and her family and his brother and his family, but I was the only grandparent.
Riley really had a lot of friends and family that were there for his party and of course, I had my camera and video to record it all. Riley really had a good time with everyone there, his cousins and friends that came...he was hammin' it up. He really liked listening to music and dancing and he had started playing with little toy action figures. He would talk to them and play act with them and they liked the music as well. He had enough new toys and clothes to stock any young boy's room. He was lucky and we all knew it.
Misty was so excited, she was sure now that he would have enough clothes to last him through the winter. The toys were a real plus, even though he had not outgrown all of his toys, he tired of them. That was one the realities we all needed to accept. At his party he received so many wonderful gifts. We truly had a fun time with Riley opening the gifts and then 'oohhing and ahhhhing' over them, he giggled over that.
One of the difficulties you face with a special child is that sometimes the age level indicated on the package does not necessarily apply to your child. You have to know what your child is capable of and what he is not capable of. It is hard for those that really do not know, and those that do, but ...! It was still fun and everyone seemed to enjoy the time we all had together along with the food.
The day ended and Sunday was upon us, I went to church with Misty and Brent and it was terrific, Riley went to the nursery where "grandma" watched over the little ones, she loved the babies and she loved Riley, you could tell. He went right on in, he obviously thought it was an okay place to be or he would have let everyone know he did not. Everyone at Valley Baptist, by this time knew Riley Joe, he had been the hit of the party a few times they had fellowship dinners or devotionals with his shy demeanor. I was happy that they all loved him here, but at the same time I could not help but feel a little jealous that they got to spend time with Riley when I could not, it seemed unfair. I know I was being silly, I just could not help it.
Well, after church we went to lunch and then a drive to some scenic areas around Searcy. I had no idea it was so beautiful there. We drove over to a lake with a damn on one side. There were people fishing in the shallow end and it looked as though they were fly fishing, it was a beautiful scene in October with the leaves changing colors. We all took turns to get out and look around as Riley and Cheyenne had fallen asleep in the car.
Time flew and we were at the airport in no time. I just had them drop me at the front so I would not have to say goodbye, or start crying.
I knew we would get together soon, we had to, it was almost like an addiction, I had to have my 'Riley fix' and Misty had to have her 'mommy fix'. My flight back was uneventful, thank goodness and I was home in less than an hour.
It was hard some times to stay concentrated at work, with the economic times of my business and the agony over not being with all the people I loved, my days were long. But I kept going because I knew there was a little somebody that was as innocent as could be and would always be that way and I wanted to be around him. Misty and Brent were still struggling financially, they would get ahead for a while and something would happen to put them behind the eight ball. It seemed to be a constant battle.
Thanksgiving came and for the first time in many years I would not be cooking. Bob and I would go with Heather and Troy to his parents' home for the day. I made a fresh fruit basket cut out of a watermelon and then filled with different fruits; it turned out great and was a lot of fun to make. We had a very nice day visiting and eating, watching movies and eating again and then there was dessert! Mmmmmmmmmmmmmmm. That is all I have to say about that.
Probe into Bulling of Down Student. News from Italy, November 14, 2006. URL: http://www.italymag.co.uk/2006/news-from-italy/current-affairs/probe-into-bullying-of-down-student/.
Italian prosecutors have opened two probes into an incident of bullying involving a secondary school student with Down Syndrome whose ordeal was filmed and posted on the Internet.
Ten years after and I feel sorry for those clueless genetic counselors, they wanted to explain chromosomes, but I had already beat them to the punch and looked that up.
All they could muster was a blank stare, one that my son does not have with his Latin tutor, when asked about bilingualism.
The episode, which became public over the weekend, prompted expressions of horror and disgust
In the footage the boy is taunted, insulted and kicked by one student in particular as others look on. The location seems to be a classroom and the people visible appear to be about 16 years of age.
[...] The case exploded after an Italian girl unconnected with the episode informed a support group for families with Down members that the video footage was available on the site of Google's Italian search engine. It was in a section called 'entertaining videos.'