Canadian Council on Rehabilitation and Work - http://www.ccrw.org/  Promoting and supporting equal and equitable employment of people with disabilities. 

CareerOneStop - http://www.careeronestop.org  The nation's publicly-funded resource for jobseekers and businesses. Find jobs--from entry level to technical to professional to CEO. Identify job-ready workers with the right skills. Locate public workforce services in your area.

Careers & the disABLED - http://www.eop.com/cd.html  Career-Guidance and recruitment magazine for people with disabilities who are at the undergraduate, graduate, or professional level. Each issue features a special Braille section.

Equal Opportunity Publications - http://www.eop.com  Find employment issues and stats concerning ethnic minorities, women, and people with disabilities. Includes links to jobs and employers.

GLADNET Association - http://www.gladnet.org/  The network brings together research centers, universities, enterprises, government departments, trade unions, and organizations representing disabled persons, all committed to the common goal of advancing competitive employment and training opportunities for persons with disabilities.

Job Accommodation Network (JAN) - http://janweb.icdi.wvu.edu  JAN, a free service of the U.S. Department of Labor Office of Disability Employment Policy, provides information about job accommodations, the Americans with Disabilities Act (ADA), and the employability of people with disabilities.

JobAccess - http://www.jobaccess.org/  Matches qualified job seekers with disabilities to companies looking to hire. Post jobs, search jobs, build resumes.

National Institute of Disability Management and Research - http://www.nidmar.ca/  Committed to reducing the human, social and economic cost of disability to workers, employers and society through education, training and research.

North West Disability and Business Technical Assistance Center (NWBTAC) - http://www.nwada.org  Provides information on the ADA to the Pacific North West states section of the United States. They have great resources on the rights of employee's and employer's with regard to the ADA.

SSA: Office of Employment Support Programs - http://www.ssa.gov/work/index2.html  Promotes the employment of Social Security beneficiaries with disabilities.

U.S. DOL - Office of Disability Employment Policy - http://www.dol.gov/odep/welcome.html  Provides information on disability employment related topics, such as: your rights in the workplace, provisions of the Americans with Disabilities Act, effective interviewing techniques, recruiting and hiring workers with disabilities. 

U.S. Equal Employment Opportunity Commission Home Page - http://www.eeoc.gov  Federal agency in charge of administrative and judicial enforcement of the federal civil rights laws, and providing compliance education and technical assistance. Find facts about employment discrimination, filing a charge, small business information, enforcement and litigation, and the use of ADR in employment disputes.

Work World - http://www.workworld.org/  Information, support, and free copies of WorkWORLD, decision support software for personal computers designed to help people with disabilities, advocates, benefit counselors, and others explore and understand how to best use the work incentives associated with the various Federal and State disability and poverty benefit programs.

If in the last few years you haven't discarded a major opinion or acquired a new one, check your pulse.  You may be dead. 

~Gelett Burgess

2/17/04

Dear Mrs. Hoffman,
   Thank you for the latest issue of CLSF news. It’s full of fine pictures and real information.
   I spoke to Ashley Hayden’s mother on the phone and hope that that family can keep us all in touch. Sometimes I think that there is more to learn from parents and sisters than from scientists. I wish I could do something to answer some of the difficult questions that are asked in these few pages of News. Probably just writing about them again and again through the year will give some answer.
Best wishes for 2004!

Grange S. Coffin, M.D.
Berkeley, CA
 

Mark Blyth, Age 8

3/15/04

Dear Mary,
   I thought I would write and let you know how Mark is doing. He is eight years old now and he is getting really cheeky.
   We have been going backwards and forwards to the hospital in London as he has had a plaster jacket on to straighten his back. He has had it on for about six months now. He went to have it changed in February and the doctor said that he only had to have this on for six to eight weeks this time, and then he would be fitted with a brace again so he is having his plaster off on the 2nd of April, but it has worked. His back is a lot straighter now and you can now see how tall he is getting.

   He is doing really well in school as well. He is now in middle phased. He has also lost some of his teeth in the front, one of them he lost when he was in hospital under anesthetic and they thought that he may have breathed it in so they x-rayed him but couldn’t find it, but later on before they let him come home they gave him another one but still didn’t find it. They said if the developed a cough or chest infection then go take him back but he has been alright. I know that he will like to have his plaster off so that he can do the things that he likes doing, like swimming and having a bath.
   What I want to know is though why didn’t Bedford refer Mark to London before so that he could have this done then, he would have it over and done with by now as Bedford obviously didn’t know what they were doing, and his back got out of control. Anyway, I will update you again soon as I have to go now.

Yours faithfully,

Jacqueline Blyth
Bedford, Great Britain

Kai Dunne

   Kai is the son of myself and my partner, Paul. Kai’s elder brother Dylan, and twin sisters Anissa and Katrina have featured in the CLSF newsletters on previous occasions from information provided by my parents Monica and Bob Mitchell.
   Kai is now at home with his mother Sarah and her partner, Paul. He was born approximately two weeks prematurely, delivered by Caesarian section, weighing 5bs 2oz. At that time his breathing and circulation caused sufficient concern to see his immediate transfer to Newcastle upon Tyne, Freeman Hospital, Child Heart Unit.
   After a brief recovery, Kai’s mother was able to join him at the Child heart Unit where a diagnosis of Ebsteins Anomaly was made and where he was closely monitored for a further two weeks before being allowed home.
   Ebsteins Anomaly is the partial failure of the tricuspid valve lying between the right atrium and the right ventricle of the heart. This condition causes deficiency in the oxygen delivery which in Kai’s case is presently displaying a level somewhat low at 80%. Mr. Chadhary, the Heart Unit Consultant has expressed his satisfaction of Kau’s tolerance to the condition advising, for the present only regular checks unless Kai’s tolerance is shown to decline, which would be seen, most likely, in the first instance as a loss of his pink skin tone.
   Within recent weeks hearing tests by Audiology staff, again at Newcastle upon Tyne Freeman Hospital, gave further cause for concern. These tests, repeated on January 5th, confirmed substantial hearing loss which is to be addressed as soon as possible with the use of hearing aids.
   Ongoing advice from Mr. Loftus and his colleagues, who specialize in the education of parents in this situation, and further assessment by Mr. Meikle, ENT Consultant, with Kate Johnstone and Clive Elliot of the Audiology Department will determine the suitability of Cochlear implants if response noted with the hearing aids is less than desired.
   The Institute of Human Genetics, in Newcastle upon Tyne, has confirmed a diagnosis of Coffin-Lowry syndrome after taking a blood sample recently.
   Kai is active and alert. He eats and sleeps well and has put on weight as would be expected. He appears to interact with faces close at hand and any object which is lit, or which contains lights. He will grasp tightly if given a finger to hold, and likes to be held very closely. He has recently made the transition from micro to newborn nappies and whilst still very small he is making progress.
   At birth Kai had two small teeth resent, these were removed during his stay in the Child heart Unit to preclude them from becoming dislodged and causing an obstruction.
   Kai’s tolerance to the heart problem remains satisfactory, his weight is now in excess of 10 pounds and he has already outgrown his first ear molds for the hearting aids. New molds are to be made, but Kai’s response so far has been disappointing.

Sarah Mitchell
Northumberland, Great Britain

Jason Humphreys, Age 23

Dear Mary;

   I know that it has been a very long time since I have sent any type of information about Jason but I have had a really wild time for the last couple of years. But anyway I was just wanting to let everyone know that they can get free meds if they can get their doctors to sign the applications and write scripts for 90 days at a time there is no problem.  I learned that you can go to a site called http://www.RxHope.com print the applications out, follow the instructions with a little help from their doctors or a good nurse and make sure to keep copies of these files.
   It takes about six weeks to get started getting the meds but considering my new husband takes about 1500$ a month in heart and stomach meds and I am able to get them for just the postage cost and the doctor visit with him signing the paper work.  The time is well spent.
   I do not have long distance but if I can help anyone get started with these applications I will be more then glad to help out any way possible. Just be sure to note in the subject line that it is for getting help with meds for our kids or their family, because if I do not like what I see in the subject line or do not know the sender I delete with out reading because of all of the junk that is sent now days.
   Another place that’s really good for getting help with meds is http://GlaxoSmithKline.com, but you have to be a health care provided or working with a doctor to get set up with them. I did find a way around that also.  I was helping a person here locally that was working with all of the doctors and she was able to get me an advocate number. But that is all you need is a doctor or nurse to work with you on that also.   There are ways around the system to get help with meds for all of us at little or no cost to any of us. Just have to do the paper work. As my father always said, "There is no job until the paperwork is done."  
   Thank you for being there for all of us. I hope just the little bit I have passed on will help some body get the help they need.  
   God Bless Everyone of you, Stay strong, because we all need each other.  

Vickie Sinclair Therrell
Palestine, TX
 

Matthew Allen, Age 14

Hi Mary,

Matthew is now using a Walking Frame when he goes for a walk down the street and in the schoolyard at

 play-time. I think that some of Matthew's falling is from balance problems .He can stop himself from falling when he is using his frame by pulling himself up by holding on to the frame. He also has some falls due to drop attacks. He is a very healthy child. Matthew likes it when I take photos of him and make it into a book for him to look at. I have put some photos on the group site on yahoo. I have also put a photo in this email for your records.

Lawrence & Margaret Allen
Victoria, AUSTRALIA

To whom correspond:
   Thousand Thanks by answering me, sincerely did not expect that did it.
   Through the present wanted to request them they think it proper to send me information referred al Syndrome of Coffin-Lowry.
   I am mom of a disabled boy and besides I work with special children among which is found Fede that suffers of this new syndrome for my. The boy in question is called Federico Muratore and was born July 16, 1991, to the date counts on 14 years, is llendo to special school and has several additional therapies as to be: psychology, psicopedagogía, equinoterapia, psicomotricidad and massages.
   It wanted to agree to recent information, to the last investigations, to all kinds of informations that help me to obtain in my patient a better quality of life.
   My occupation: Masoterapeuta specialized and Terapeuta in Early Stimulation, with knowledge in Gymnastics Rehabilitadora and Psicomotricidad.
   In itself it would please me to know which is the degree of recovery of these boys and if is that its contectura physical goes "degenerating" to the extent that passes the time, Fede is itself encorbando ¿is this normal?
   Fede does not lend attention to verbal orders and besides is very "rough" al manual moment to carry out works, this is also normal?
   Does not have a specific vocabulary, walks with clumsiness but..recalls to the perfection songs or preestablished norms.
   The dad is the person that more worries since lives expecting the miraculous hand that remove to Fede of this state ¿such hand exists?
   Good, not the uncomfortable one but and again THOUSAND THANKS by its time and dedication, we maintain ourselves in contact.

Zunilda Orellano
Province of Buenos Aires, Argentina
 

Matt Young, Age 34

   Matt is on 200mg lamictal in the am and 200mg in the pm. His drop attacks are still there but have decreased immensely. He has gone from 30-40 a day to only a couple daily. What a difference the meds made. At least now we can talk to him in the morning and not have constant attacks. I am very pleased with these results.

Good Luck and God Bless

Barbara Westerhouse
Oxnard, CA
 

The greatest explorer on this earth never takes voyages as long as those of the man who descends to the depth of his heart.  ~Julien Green

Title V

   Every state has a Title V Program which is funded, in part, through the Federal Title V Block Grant that provides health-related services to children with special health-care needs—sometimes abbreviated as “CSHCN” - and their families. Title V Programs also provide assistance in accessing other services that CSHCN and tier families need, such as parent support and information networks.
   The financial eligibility criteria, residency criteria and medical eligibility criteria for these programs caries from state to state. These programs are also known by different names in different states. For a complete list, see: http://www.ichp.edu.

Somnolence and CLS

Daniel Lewin is a sleep disorder expert at George Washington University School of Medicine in Washington, D.C. He has asked that I post this to the group. Please contact him if you have any information regarding his request. I have not heard of a case such as he describes below, but perhaps one of you are familiar with this. This is not normal sleep apnea as we are familiar with it.  Thanks in advance. - MCH

Daniel Lewin <DLewin@cnmc.org> wrote:

Ms. Hoffman,
   I have followed an adolescent with CLS for a couple of years. We first evaluated the patient in our sleep laboratory and found that the patient had excessive daytime somnolence. This was confirmed during a 2nd over night sleep study. An unusual pattern of behavior has recently emerged that involves a weekly cycling of disturbances in mood, attention, and social interactions. The hypersomnia and cycling of mood have, thus far, not responded to medications (psychostimulants and antidepressants). I would be interested in hearing if other families or clinicians have observed excessive daytime somnolence and rapid cycling in mood.

Thank you.

Danny Lewin, Ph.D.
Director, Behavioral Sleep Medicine
Assistant Professor of Psychiatry and Pediatrics
Division of Psychology
Children's National Medical Center
George Washington University School of Medicine
111 Michigan Avenue, NW
Washington, DC 20010
(202) 884-6209

Hypersomnia refers to either excessive sleepiness during the day or extended, overly long periods of nighttime sleep. Other words that are synonymous with hypersomnia are excessive daytime sleepiness (EDS), excessive sleepiness, or somnolence.—MCH

Man stands in his own shadow and wonders why it's dark.  ~Zen Proverb

Resources You Can Use

   The Tennessee Disability Pathfinder is a free, comprehensive information and referral service for children and adults with disabilities, family members, service providers and advocates. Information is provided in English and Spanish by contacting 1-800-640-4636, 1-615-322-7830 (Nashville), or 1-800-273-9595 (TTY).
Please visit our Internet site at www.familypathfinder.org and select “Pathfinder en Español” to view national and local bilingual resources. The services of the Tennessee Disability Pathfinder are made possible through a partnership between the Vanderbilt Kennedy Center for Research on Human Development and the Tennessee Council on Developmental Disabilities.
   For more information on Tennessee Disability Pathfinder please contact:
Para más Información sobre Tennessee Disability Pathfinder, comuníquese con:

Solange Bishop
Social Worker
Vanderbilt Kennedy Family Outreach Center & Clinics
1810 Edgehill Avenue
Nashville, TN 37212
1 (800) 640-4636
1 (615) 322-7830
1 (800) 273-9595 TTY
1 (615) 936-5010 Fax
solange.bishop
@vanderbilt.edu

Thanks for Caring!

The following families or individuals have recently made generous donations to the Coffin-Lowry Syndrome Foundation:

Grange S. Coffin, M.D. Berkeley, CA

Robert & Barbara Kline
Roseville, MN

Send your donations to:

Coffin-Lowry Syndrome Foundation

c/o Mary Hoffman

3045 255th Ave SE

Sammamish, WA 98075 

(U.S. Funds, please)