Connect with Parents and Professionals
A list of parents and professionals who would be interested in talking, writing or emailing with others about Mucolipidosis IV. Complete and submit the form below if you are interested in adding your name to the list. If you need to make changes to your submission, let us know. 
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Comments:
Gigi Baxter (416) 651-1331 <gigi@ml4.org> - 04/01/97 22:36:53 EST
Toronto, On Canada
8 year old son, Greg with ML4.
Randy Yudenfriend ML4 Foundation 718-434-5067 <ML4www@AOL.com> - 04/14/97 23:28:07 EDT
Brooklyn, NY USA
President, ML4 Foundation, Mother of two affected children
...this guestbook is now open for new visitors... - 05/26/97 20:41:22 EDT
parents, if you would like to share information on 'what works', just type in the comments section and it will display here...
Randy Yudenfriend Glaser 718-4334-5067 <ML4www@aol.com> - 06/04/97 10:48:49 EDT
Brooklyn, NY USA
I am president of the ML4 Foundation and I would appreciate any phone calls from parents or interested parties
Deborah and Rob Braniff 519-936-8149 <debrob.braniff@start.ca> - 06/13/97 11:57:46 EDT
London, ON Canada
3 1/2 year old son with ML4 (Aaron)
Zvi & Gete Freund <zvifreund@juno.com > - 06/24/97 00:41:02 EDT
QUEENS, NY USA
we have a 4 1/2 year daughter who was evaluated at NIH in 1/97. suggestions were made that were helpful once implemented.
We need a few more pictures for the newsletter page... <gigi@ml4.org> - 07/01/97 07:18:10 EDT
... and it will help us get acquainted across the miles.
If you a pic or two you can spare for a bit, please
send scan as email attachment.
John and Sheri Karobonik <apple964@aol.com> - 07/08/97 10:54:12 EDT
Tucson, AZ USA
We have a 7 1/2 year old son with ml4.
Nadine Zar Israel 09-7602148 <snzar@netvision.net.il> - 07/22/97 02:12:49 EDT
Ra'anana, Israel
We have a 4yr old daughter,Sara,with ML4,and would like some contact withe othher parents of ML4 kids
Ellen Beckerman <sb101566@aol.com> - 07/26/97 23:16:44 EDT
Hartsdale, ny USA
I have a 29 year old son, Andrew, who has ML4.
Barbara and Joel Helmrich (412) 221-2605 <JBJRH@AOL.COM> - 07/27/97 22:39:53 EDT
Pittsburgh, PA USA
We have an 8-year old daughter with ML4. We are wiling to share our experiences with other parents and professionals.
Ellen & Jeff Silberman 847-695-6961 <Silber1305@AOL.com> - 07/28/97 00:05:17 EDT
Elgin, IL USA
We have a ten and half year old daughter,Stephanie, with ML4. We are willing to talk to other parents or professionals regarding ML4.
Olga Sanders 250-395-3430 <Sanderrm@netshop.net> - 09/24/97 04:58:09 EDT
100 Mile House, B.C. canada
I am looking for information on type 3 mucolipidosis for a friend
David & Sandi-Lee Gabriel +61-3-95783457 <gabes@netspace.net.au> - 10/07/97 08:08:57 EDT
Melbourne, Vic Australia
28 mnth old daughter, diagnosed (probable, but likely) just today (Oct 7) with MLIV. Any info, contacts etc appreciated.
Pablo Kalbermann 598-2-9164849 <pablok@chasque.apc.org> - 04/13/98 19:06:37 EDT
Montevideo, Uruguay
I have a brother of 26 years old with ML4. Lots of Love is the way to go!I am looking forward to speaking with you! My brother was diagnosed by Gideon Bach and still in touch with my Mom.
Debra Parker <bpdp@mindspring.com> - 07/08/98 13:23:35 EDT
Atlanta, GA USA
I have a 21 year old daughter, Aimee, with ML4. We just completed out second trip to NIH. Communication from interested parents welcome.
Ehud Goldin 301-594-3133 <Goldin@codon.nih.gov> - 07/31/98 10:34:05 EDT
Bethesda , MD USA
I do research on ML4 at the NIH.
Michael Isaacson 301-251-9670 <maisaacs@artsci.wustl.edu> - 07/31/98 10:39:13 EDT
Potomac , MD USA
I have been helping Dr. Goldin with his research this summer. I am also a cousin to Scott Reich.
Jon Gale 816 943 0949 <jsrgale@swbell.net> - 09/03/98 16:58:24 EDT
Kansas City, MO USA
Son Ryan is 4 years old, diagnosed w/ML4 at age 1. Have been to NIH for their study, and participated in other ML4 researchers studies when possible. Would welcome all questions, news, etc. especially your "what has worked" experiences
Anita Kalbermann 598 2 7110146 <akalber@chasque.apc.org> - 10/26/98 10:47:31 EST
Montevideo, Uruguay
My nephew Carlos Kalbermann suffers from MLIV. I understand that Dr. Kolodny was in Montevideo about 6 months ago taking family samples (brother's, parents'). I would be interested about the possibility that my children (having the same grandfather Ernesto Kalbermann) have any chance of being carriers. They are normal and healthy, aged 27 and 28. Therefore, it is likely that in the near future they will become mothers and the subject become of our utmost concern. Thanking you for your information,I remain, sincerely yours, anita kalbermann
Amber Exline <Milo-Baby@webtv.net> - 11/04/98 20:15:10 EST
Vacaville, ca USA
hi i am doing a report on mucolipidosis 4 and wanted to know if anyone could help and send anything on it thank u amber
Kate Rosenthal 315-422-34323 <katemslaw@aol.com> - 12/26/98 15:30:13 EST
syracuse, ny USA
my niece has the disease and i am very interested in all aspects of research on MVIV...please keep me informed
Betty Getchell (714) 779-9067 <egetch@ aol.com> - 01/23/99 00:15:18 EST
Yorba Linda, Ca USA
I have an 8 year-old girl, Sara, with ML4. I would like to talk to any parents of ML4 children.
Brunner Christophe 03 88 47 33 49 <cbrunner@club-internet.fr> - 01/30/99 17:19:14 EST
67130 Lutzelhouse, France
We have a child (7 years old) with the Mucolipidosis 4 and we would like to connect with other parents to discuss about it.
Aliza Kravetz 212-795-4265 <kravetz@hotmail.com> - 03/01/99 16:04:43 EST
ny, ny USA
Hi. Since Buddy and Scott were in my bunk and I got to spend time with Lara I have been extremely interested in ML IV
Janet Price 913-491-0760 <kcjanetp@aol.com> - 03/23/99 21:17:43 EST
Leawood, Ks. USA
Would like to hear from parents or grandparents of ML4 children. I am the grandparent of a beautiful 4 year old boy.
Avi Pollak 516-481-4210 <pollak@ymail.yu.edu> - 04/27/99 14:56:40 EDT
West Hempstead, NY USA
I too, like Aliza (above), was a counselor of a wonderfulcamper ("Yummi" or Benji) for several summers in Camp Hasc.Keep up the good work!-Avi Pollak
Richard D. Humleker, Jr. 914/794-1400 - Ext. 1267 <rhumleker@sdtc.org> - 05/08/99 10:55:46 EDT
Harris, NY USA
The Center for Discovery can be a resource for families with multiply-disabled and medically fragile children and adults.
Hui-Chen Pan 07-5858975 <panhuigg@ms32.hinet.net> - 05/29/99 11:27:18 EDT
Taiwan
Hello:My son's report said "He is ML." But I don't know he is which kind.How can I know he should be which kind?
Janet Price 913-491-0760 <KCJanetP@aol.com> - 06/01/99 16:13:35 EDT
Leawood, Ks. USA
Want to hear from parents or grandparents of ML4 children. Its pretty lonely here in the midwest.
Michael Held <md7234@aol.com> - 07/02/99 20:53:09 EDT
great neck, NY USA
looking for a description about ML4
Joanne Robson 520 615 3657 <joeyjojo3_68@yahoo.com> - 07/26/99 01:48:22 EDT
Tucson, AZ USA
I am an RN specializing in pediatric BMT and am interested in finding out more about this disorder
Dr. S. A. Igdoura (905) 525-9140 ext 27729 <Igdoura@mcmaster.ca> - 08/14/99 17:09:27 EDT
Hamilton, ON Canada
Looking for physicians who could provide us with DNA samples from mucolipidosis IV patients. We have a candidate gene which we like to screen for mutations.
Helene N/A <csmith9720@aol.com> - 09/20/99 22:42:43 EDT
Havertown, PA USA
Any information regarding educating children with ML-4 would be helpful.
Rifki Freundlich 410-358-2866 <rfreun2@tiger.towson.edu> - 11/24/99 12:14:10 EST
Baltimore, MD USA
Working with the most wonderful children (Bradley, Jonathan, Scott and Lara) changed my life... I am forever grateful for that opportunity.
Katharine Bedford <Katharinebedford@hotmail.com> - 01/12/00 08:25:35 EST
Wakefield, England
I am a teacher in a special school in Barnsley. A pupil in my class has recently been diagnosed as having Mucolipidosis Type 1V. Any information / support would be welcome.
Oliver Bleuer 514-213-5633 <obleuer@videotron.ca> - 01/13/00 09:36:17 EST
St. Constant, QC Canada
My son Morgan passed away March 26, 1999.The support of the ml4 foundation over the last ten years has been very important to us. I am always open to hear from other ml4 parents and siblings.
AJ Siegel 860-232-5902 <structure@home.com> - 01/17/00 01:51:27 EST
West Hartford, CT USA
My best friend's sister has ML4 and I am really interested in learning about it. I want to understand it more so I can helpher through this. I really care about my friend and want to beable to understand what she is going through.
Shaun Jayachandran 202-242-2148 <deepak@gwu.edu> - 01/19/00 19:36:28 EST
Washington, DC USA
Currently working with Dr. Goldin at the NIH.As well, wanting to cover this as a beat story for a class at The George Washington University with a professor from the Science Section of USA Today. Any feedback, or anecdotes would be wonderful.
Herb & Linda Ellcey 231-821-0438 <n/a> - 02/19/00 14:55:20 EST
Fremont, MI USA
our home address is : 9352 S. Dickinson Rd. Fremont, Mi 49412
Bob 555-5555 <ibfromdaghetto@hotmail.com> - 03/08/00 17:34:14 EST
marlboro, nj USA
doing a research report on mucolipidosis would appreciate info. thanx
Kristie Foote prefer not to say <CrewGrl000@hotmail.com> - 03/08/00 17:49:01 EST
Bedford, NH USA
Hi. I am doing a report on Mucolipidosis IV for my 9th grade biology and i am interested in this pen-pal for information for that project. if anyone would like to help (info about it, how it feels etc), i would be very obliged. thank you very much. -kristie foote
Richard H. Schick 248-684-0108 <RikSchickH@gateway.net> - 06/12/00 21:07:02 EDT
Milford, MI USA
We have a son named Derrick he will be 12 in July. Mom would like to chat.
Marylin Magaram <fiddler67@AOL.Com> -
Staten Island, NY USA
I am a Special Education teacher here in Brooklyn,NY. A student with ML4 has just entered my class. I would very much appreciate advice, suggestions,and support from other teachers with experience helping ML4 students grow. Thank you.
Isaac Hutchings 709-475-2232 <ihutchin@stemnet.nf.ca> -
Lower Cove, Nf Canada
I am an Itinerant Teacher for Students who are Visually Impaired. I have two students on my caseload with ML4. One parent is emotionally disturbed by possibility that her child's vision is getting worst and may go blind. The parents, child, and myself need all the information about this disorder you can supply. Maybe, someone may want to talk to the family about this disorder if they would like to consult with others.
There's a new medical article under what's new. If you'd like to read it click here. If your browser says you can't read the file, click here and download the free Acrobat reader.
Maureen Sweeney <msweeney@enteract.com> -
Skokie, IL USA
I am a Speech/Language Pathologist seeking information about ML4 related to treatment. I would appreciate any leads on specific strategies. Thank you
Lyshon Gladney 662-289-1950 <Nechele_g@yahoo.com> -
Kosciusko, Ms USA
I've been doing some research on ml4 and I was just wondering if you could provide me with some info. I've gotten alot of research done myself but just wondering if you could give me just a little more.
SUSAN VECCHI 0012553934626 <sguerrero@email.com> -
Mexico City, USA
I had a beautiful daughter named Renata who suffered this terrible disease. Thank God she is resting now, I would love to help people with the same problem.
Michele Bieber <martybieber@aol.com> -
Melville, NY USA
I am the mother of a seventeen year old ML-IV boy.
Gigi Baxter (416) 651 1331 <gigi@ml4.org> -
Toronto, On Canada
Greg's new communication program is over at http://www.astimegoesby.ca. Greg just turned 12.
The LIVE CHAT is up and running! Make a meeting time with someone by email and chat online. Or join in every Sunday evening at 8:30pm-9:00pm EST to watch or participate in the conversation. If a question or comment comes to mind, but you don't have time to chat, click Q & A at the top of this page to ask a question, give an answer or make a comment on any ML4 issue.
Ruth Silva <melanie1_00@yahoo.com> -
Bay, PR USA
I want to know more informations about mucolipidosis III and IV
Debra Parker 770 445 5833 <debraporker@aol.com> -
Dallas, GA USA
Hello! I am the mother of a 23 year old daughter, Aimee, with ML4. I am also a Special Education Teacher. I invite questions and communication concerning ML4 from other parents, professionals and interested persons.
Fook Chee <fookchee@hotmail.com> -
Singapore, Singapore
Would like to communicate with professionals and parents who are familar or experience in mucolipidosis
Maggie White 916 781-6221 <mwhite@scmail.sierra.cc.ca.us> -
Sacramento, CA USA
We have two adult children with MucolipidosisIII. We attended the conference at UCLA; however, no enzyme therapy for the mucolipidosis disorders.
Bryna Bozart-Barnes 707-379-5000 <BeeBeeMPS@aol.com> -
Charlotte, NC USA
I have two grandchildren with this condition.
Jennifer Minnelli 919-680-2984 <jminnelli@nc.rr.com> -
Durham, NC USA
I am a speech language pathologist specializing in pediatric dysphagia. I have two patients with MLIV and want to learn more about the disease to better service my patients. Please give me any rehabilitative information regarding speech anf feeding therapy for patients with MLIV. Thanks
Susan Schick 248-684-0108 <RikSchickH@aol.com> -
Milford, MI USA
My son Derrick is 13yrs. old now. I willing to chat with anyone with concerns.
Oliver Bleuer 514.910.2034 <obleuer@videotron.ca> -
St-Constant, QC Canada
Always open to share my experiences with my son Morgan.Please update my phone number
Albert Bozart 919-309-2668 <bozart@email.unc.edu> -
durham, nc USA
both of my daughters have the condition and we are interested in learning more
Alie Chandler <aliechandler@hotmail.com> -
Monticello, NY USA
Music therapy intern working with 2 wonderful kids with ML4. Would love to hear about musical interests, etc
Betty Getchell (714) 779-9067 <Egetch110@aol.com> -
Yorba Linda, Ca USA
My daughter Sara is 11 years old and I would like to talk with any other ML4 parents.
Bryna Bozart-Barnes 704-535-4586 <BeeBeeMPS@aol.com> -
Charlotte, NC USA
I am a grandmother of two ML4 children.
Ron & Lynn Goldblatt 845-425-0639 <lynnronjan7@aol.com> -
Monsey, NY USA
We are the founders of the ML4 Foundation. We have a 22 year old daughter (Yael) with ML4. Would be willing to offer any support to any new ML4 parents.
Paula Meier <eyeteam@worldnet.att.net> -
Mattawan, MI USA
I would like to know if anyone has had this diagnosis without the corneal opacities.
Andrew Scharenberg 206-221-6446 <andrewms@u.washington.edu> -
Seattle, WA USA
I am an ion channel researcher interested in the role of MCOLN homologues in cell biology and immune system function.
Karen Azbell <kazbell@uplogon.com> -
rock, mi USA
Ijust lost my 35 year old daughter shelly one year ago to mucolipidosis III. iF YOU HAVE ANY QUESTIONS, JUST EMAIL ME.
Albert and Chris <bozartfam@yahoo.com> -
durham, nc USA
here is our new address
Marie E. Onorato 773-376-6498 <monorato@lawggf.com> -
Chicago, IL USA
My 19 year old son, Joseph Scott Adams, whom I understand, is the only bi-racial child world-wide (unless statistics has changed), has Mucolipidosis III (ML III). Is there anyone else, possibly around the same age range --who is interested in being a life-long pen-pal? Also, on another matter -- I'm looking for any career opportunities for him -- my son has a brilliant mind, but only has limited mobility; I hate to see him on Social Security as the only means to make a living. Thanks, his mother, Marie.
Gideon Bach <Bach@hadassah.org.il> -
Jerusalem, Israel
To inform you that MLIV carrier testing is performed in our center for over 1 year. Department of Human GeneticsHadassah hospitalEin KeremJerusalem
Luis Ibaceta Escobar 562- 7734626 <ibacetaperez@terra.com> -
Santiago, Chile
I m father of the girl (age 3 months) with Mucolipidosis IV.Please send me information about the treatment.Best regard,I dont speack english, I speak spanisk,By,
Marie Onorato 773-376-6498 <monorato@lawggf.com> -
Chicago, IL USA
My son, Joseph Adams, who is 19 years old, and from what I understand, has Mucolipidosis Type III (Chromosone 4) (there is no support group, that I know of); Does anyone have any info?
Sergio Monte-Alegre <smontea@tnet.cl> -
Santiago, CHILE
Hola,quiero saber algo de tratamientos para niņos menores de un aņo
Chris <rawsonchris@hotmail.com> -
UK
I work with a man who I have recently discovered is afflicted by this disorder. He is non Jewish, and apparently misdiagnosed. Where can I find more information about this disease
Donna DeAngelis <mom2stephanie01@wmconnect.com> -
West Babylon, NY USA
My daughter is a year old and was diagnosed with Mucolipidosis II at 10 months old. Do you have a chat group for this type?
Rachel Zimmer (516) 938 - 6965 <rayzim21@hotmail.com> - 9/23/2002 18:01:28 EDT
Plainview, NY USA
I am a genetic counseling student at SLC and would like some information for a class presentation and b/c I am also of Ashkenazi Jewish heritage.
Emyr Lloyd-Evans <emyr.lloyd-evans@bioch.ox.ac.uk> - 10/24/2002 07:26:08 EDT
Oxford, UK
I'm a Niemann-Pick C researcher from Oxford Uni. U.K. I'm interested in comparing NPC with MLIV, I have a feeling that both diseases are very similar. Recently the trafficking defect in NPC was corrected by overexpressing Rab proteins, I would like to see whether there is a similar problem in MLIV cells and whether it too can be corrected. If there are any researchers/MD's out there who are willing to share MLIV cells for this purpose could you please contact me. Thanks.
Lori Steiner 561-304-3833 <lori0636@aol.com> - 11/10/2002 09:26:47 EDT
Lake Worth, FL USA
I have a four year old son Ethan, who is diagnosed with cerebral palsy and autism. He really doesn't fit well into either diagnosis. His father and I are both Askenazie Jews. Ethan is beautiful to look at. He makes sounds but doesn't talk. He did use a walker, but no longer does. He is spastic, but has no muscle tone. He had surgery for stabismus. Ethan is very small; he weighs 27lbs. but eats a lot. We just heard for this disease and feel like our son might have ml4. Where do we go from here? Lori
Holly Marec <Moodi13@msn.com> - 11/25/2002 22:40:18
Cleveland, OH USA
My 15 month old daughter has just been diagnosed with ML-IV. I would like to talk to other parents who have children with the same disease.
Sylvie Beneteau 02.51.62.48.89 <mathieulejay@hotmail.com> - 12/24/2002 10:46:09
la Roche sur Yon, France
Je suis la maman d'une petite fille de 11 ans atteinte de la mucolypidose T4.
Christophe Brunner 33 3 88 47 33 49 <brunner.christophe@free.fr> - 1/25/2003 13:19:56 EDT
Lutzelhouse, France
Hello, My e-mail address has changed. Now it's brunner.christophe@free.fr Brunner Christophe 03 88 47 33 49 - 01/30/99 17:19:14 EST 67130 Lutzelhouse, France We have a child (7 years old) with the Mucolipidosis 4 and we would like to connect with other parents to discuss about it.
Meaghan McLeod <meaghanmcleod@hotmail.com> - 2/26/2003 17:48:23 EDT
Vancouver, B.C. Canada
I am a Speech-Language Pathologist who is working with a 4-year old girl suspected of having mucolipidosis 4. The diagnosis is getting closer and closer to being confirmed after a long period of not knowing the causes of this child's developmental delays. I am interested in hearing about any families' experiences with speech therapy and what they found most helpful about speech and language services.
Rachel (330) - 833 - 5117 <LT20813@aol.com> - 4/7/2003 20:51:19 EDT
Massillon, OH USA
I am doing a project for school and your website has helped alot. If there is any information about ML4 that would help me on my project please e - mail me at LT20813@aol.com Thank You
Catherine Garrett <riflecat@yahoo.com> - 4/9/2003 14:51:29 EDT
pa USA
I work with a girl who has ML4 in the summers and am having trouble finding information about ML4 that would help me make her summer more enjoyable. If anyone has any suggestions or ideas that you think may help I would appreciate it.
Susan and Paul Tanenholz 410-480-5085 <tanenholz@hotmail.com> - 4/10/2003 23:01:09 EDT
Ellicott City, MD USA
Our 2 year old daughter has just been diagnosed with ML4. We are very interested in speaking with other families who also have children with ML4. We hope to hear from you soon.
Naomi Muonio <yimmy_07@hotmail.com> - 4/11/2003 09:01:23
St.Francis, MN USA
I need information on where someone can go for help if they have a sibling/child whit Mucolipidosis type2 (I-cell)
Jeannie Han (714) 282-1512 <jkim-han@fullerton.edu> - 7/29/2003 21:00:34 EDT
Anaheim Hills, CA USA
We are trying to find out more about ML4. We are still trying to rule it out for my son who is 5. We are Korean so I'm not sure if ML4 is what Nathaniel has. Have any of the children with ML4 had deterioration in functioning skills i.e. Nathaniel was eating by mouth until this past April but is no longer able to eat or digest his food so is now fed by j-tube (feeding tube into the small intestines); he also walked until last December but is no longer able to. Is ML4 a degenerative disease? I have many more questions but I'll start with these. Thank you.
Christine Noto (845) 794-7220 <cnoto@sdtc.org> - 9/21/2003 19:14:10 EDT
Monticello, NY USA
I am a teacher of students with disabilities. I'd love to talk with any professionals or families.
Yocheved & Louis Wohl 516-481-9234 <louis181@yahoo.com> - 10/22/2003 16:21:02 EDT
West Hempstead, NY USA
parents of a 23 year old ml4 girl
Kristen Brennan (201) 452-4372 <kristenmarie120@hotmail.com> - 11/3/2003 15:43:33 EDT
Harris, NY USA
I am currently a music therapy intern at the Center for Discovery. Until I came to the Center I had never heard of ML4. I provide services for several students with ML4. I am doing research in order to teach other clinicians about ML4. The more people who are educated the closer we get to prevention. Any information or personal statements would be greatly appreciated. Thank you for your wonderful network of information and support.
Evelyn Latter (805) 493-0357 <Genevy@aol.com> - 11/9/2003 19:07:42 EDT
Thousand Oaks, CA USA
Had two children,now deceased, with ML4. They died at ages 32 and 37. We have two normal children who are married. We are interested in identifying those who are carriers of the genetic malformation.
becky pulcine <beckypulcine@hotmail.com> - 11/10/2003 04:46:06 EDT
USA
grandson,16mo,ml2
Catherine Garrett <trtlekltz@yahoo.com> - 11/18/2003 16:12:59 EDT
Bethel Park, PA USA
In the summers I work at a summer camp and one of my campers is a young lady with ML4. I am also attending university to become a Special Education teacher. I am interested in learning as much as I can about ML4 to help me plan appropriate activities in the summers and to prepare for future children I may work with. Any help would be greatly appreciated
onyeigbo Ndi-olu 225 03585741 <igboman@biaframail.net> - 11/30/2003 07:20:54 EDT
abidjan, ab cote d'lvoire
his 9 year old daughter ML4
Cheryl Svensen <waimea@bigpond.com.au> - 1/23/2004 02:46:53 EDT
Melbourne, Vic Australia
Have a 23 year old daughter with ML4
Sue Nolte 972-871-7375 <Lovebug 5700@yahoo.com> - 3/11/2004 11:42:36
Carrollton , tx USA
I am a therapist who sees a child with this and need to keep abreast of all new research.
Herminia Puerta 04146500547 <mipediatra@cantv.net> - 4/13/2004 14:08:29
Barquisimeto, lara Venezuela
I have a girl patients with mucolipidosis. I would like that I could to sent you specimen of blood for to determinig mutation in gen
albert bozart 910-798-8419 <bozartfam@yahoo.com> - 6/20/2004 22:24:54 EDT
wilmington, nc USA
I have two girls with ML4, ages 6 and 4 and would like to add my name to the list
Agustin Larrea (56 2)8212090 <alarrea@bee.cl> - 7/9/2004 16:39:49 EDT
Santiago, Chile
My adoptive daughter, Jesica, is 10 years old, with ML4.
D Parker <park4805@bellsouth.net> - 8/21/2004 16:41:42 EDT
Dallas, ga USA
I am the mother of a young lady, Aimee, 27 years old, with ML4. I am interested in discussing life expectancy with parents of deceased children.
Elias Traboulsi MD 216-4444363 <traboue@ccf.org> - 10/29/2004 14:54:01 EDT
Cleveland, OH USA
I am an ophthalmologist and geneticist interested in ML4. I am available to examine patients with this condition.
Linda 847-928-9498 <fnagy4@comcast.net> - 1/9/2005 11:22:48
Franklin Park, IL USA
ML III
Terri Klein 734.358.6089 <terri@terriklein.com> - 1/9/2005 22:59:59
Whitmore Lake, MI USA
Hello my daughter is 13 with ML III - Psuedo Hurler Polydystrophy. We have a support group world wide - please email me for more details. Thank you
ANDREW LEE 212-719-2222 <ANDREW1@FRANSHAW.COM> - 1/26/2005 11:54:09
NY, NY USA
NEED A LIST OF COLORS IN SPANISH FOR MY KIDS IN SCHOOL
ANDREW LEE 212-719-2222 <ANDREW1@FRANSHAW.COM> - 1/26/2005 11:54:42
NY, NY USA
NEED A LIST OF COLORS IN SPANISH FOR MY KIDS IN SCHOOL
Oliver Bleuer 514-813-8336 <obleuer@bidea.biz> - 2/4/2005 08:18:44
Saint Constant, QC Canada
Morgan our son passed away in 1999 at the age of 10. Still willing to listen and share. Please update info.
Maureen K. Marcus RN 516-741-9000 ext 265 <MKMarcus@aol.com> - 2/17/2005 14:28:32
Garden City , NY USA
Recently, the agency I am employeed with Life;s WORC admiitted a young man with ML4. Can anyone recommend a neurologist and an opthamologist familar with this condition? You may respond to the email address above or connect me via phone. All assistance is greatly appreciated. Maureen K. Marcus RN Life's WORC, Inc. Director of Nursing
Mary Ostop, PT 516-546-6289 <mostop@optonline.net> - 2/26/2005 20:32:30
Merrick, NY USA
I work with an adorable 1 1/2 year old little girl who was just diagnosed with MLIV. Her parents are in the process now of looking for research, treatment options, foundations, etc... I'm relieved to know that there is a way to connect with other families and professionals regarding this disease. I want to be as informed and as knowledgeable as possible so I can truly be of benefit to this child and her family. Thank you.
E. Murray Cecil 864-585-5577 <edisto@peoplepc.com> - 3/3/2005 17:02:24 EDT
Spartanburg, sc USA
My 2 yr. old daughter has just been diagnosed w/ ML4 a couple of days ago @ NIH
Alissa & Chris Marino 516-783-5016 <hessmarino@yahoo.com> - 3/29/2005 14:58:52 EDT
Bellmore, NY USA
Our 19 month old daughter Danielle has ML4.
Kristina Vernon 604-507-2999 <klv911@hotmail.com> - 4/3/2005 23:25:19
Surrey, BC Canada
I have a brother with ML3 & willing to speak with anyone.
Geetha.B <kugeek@gmail.com> - 4/4/2005 07:18:49
Chennai, TN India
i am very much interested to know more about MLIII as my sister's son aged 4yrs is suffering from that.
Gigi Baxter 416-652-6418 <webmaster@ml4.org> - 5/19/2005 08:15:13 EDT
Fenelon Falls, ON Canada
We had Greg's new brother carrier tested at Genedx and found the service good. Connor is a carrier of ML4. Greg is now 16 and going strong with excellent supports and programming at his new high school in the country.
Matt Grossman 215-990-8812 <mjgato888@aol.com> - 5/22/2005 16:56:36 EDT
bryn mawr, pa USA
I am doing an essay on ML4 for school and also becuase my sister has the rare disorder. If any one can give me articles or new facts about ML4 I would greatly appreciate it!
Paula Kutner 718-767-6976 - 5/26/2005 08:32:16
Whitestone,Queens, N.Y. USA
I am the mom of a 12 year-old boy with ML4, and I am on the Board of Directors of the ML4 Foundation.
Sasy Daly 301-926-2300 <sdaly@css-md.org> - 6/14/2005 10:48:12
Gaithersburg, Md USA
I work with Individuals with disabilities and have a new case diagnosd with Mucolipidosis Type 1V, and I would like more information on this condition.
Carina <Odorg_79@hotmail.com> - 6/21/2005 17:42:02 EDT
Rupert, Idaho USA
I would be so thankful for a parents story on ML II. Thank you.
Mary-Lyn <zilofmoonbeam@yahoo.ca> - 7/21/2005 14:55:00 EDT
CND
hi gigi its liz aka mary-lyn
daniela del vecchio 01142901767 <danieladelvecchio2003@yahoo.com.ar> - 8/9/2005 22:10:17
buenos aires, argentina
i m physical therapist i have treated 2 childrem with severe problems in their hips and spine mucolipidosi iv idlike to know some physical therapist who treat a similar patient i dont know in my country other profesional who are treating this kind here there alot of specialist but unfortunable nobody had patient with this illness
Yulia Gnainsky <helena2@zahav.net.il> - 8/29/2005 11:05:07 EDT
Israel
My 1 year old son has been diagnosed with ML-IV. I would like to talk to other parents who have children with the same disease. Did anyone try a special diet that can help or something else that can help?
Jim Pickel 301-594-5160 <pickel@nih.gov> - 9/1/2005 22:04:05 EDT
Bethesda, MD USA
At the NIH we are working in collaboration with others on a mouse model for mucolipidosis IV.
MICHELE BIEBER <MBIEBER@NYBLOODCENTERNEWYORK> - 9/9/2005 11:49:36 EDT
Melville, New York USA
21 year old son in a small house with 4 other residents and in a day school in Long Island doing great
Murray and John Cecil 864-585-5577 <mcecil77@charter.net> - 9/23/2005 19:18:57 EDT
Spartanburg, SC USA
New e-mail.21/2yr old daughter w/ ML4. We have no Jewish ancestry. Where's the ML4 mouse? Does NIH have it yet?
Denni <Denni> - 10/25/2005 14:02:35 EDT
USA
Thanks for this site!
Ellen Beckerman <sb101566@aol.com> - 11/22/06 14:03:44 EDT
Hartsdale, ny USA
Andrew passed away on November 29, 2005 due to complications of ML4. He was 37 years old. His struggle with various health issues (feeding tube and respirator) was incredible but he never complained. He was the sweetest, dearest person and we miss him terribly.