March 2010
Deanna Lynn Potts Scholarship aware - Deadline is June 30th
Raptor is Planning Phase III Trial for the Delayed Release Cysteamine CapsulesNovember 2009
Cystinosis Diagnosed in Russia
Summary of the International Congress in Ankara, TurkeyFebruary 2008
Information and Registration for the 2008 International Cystinosis Conference
Cystinosis Foundation New Jersey Annual Dinner Dance Fund Raiser
October 2007
Announcing the 2008 International Cystinosis Foundation Conference in Dublin, Ireland
Ashley Kazian the 2007 Miss United States. Promotes Cystinosis Awareness
Announcing the Availability of Carnitor(R) SF (Levorcarnatine) Sugar-Free Oral SolutionSeptember 2006
A Summary of the 4th International Cystinosis Conference (2006)
A Slideshow of the 4th International Cystinosis Conference (2006)
Richard and Mary Jordan were featured on a Discovery Channel segment on difficult to diagnose diseases (video)
Australia had their very first Cystinosis Conference and was a huge success, Sue & Serena will have a summary and pictures for us on their websiteJanuary 2006
Dear Friends Letter for Janaury By: Jean Hotz (01/2006)
Announcing the 4th International Cystinosis Conference (2006)
13th Annual Sweetheart Balloon Rally Hosted by Holly & Dan Reuter
New Jersey Chapter's Annual Dinner Dance will be in March (flyer coming soon)
Richard and Mary Jordan were featured on a Discovery Channel segment on difficult to diagnose diseases (video coming soon)
Rumors abound that there may well be a Cystinosis Conference "Down Under".... stay tunedSeptember 2005
Dear Friends Letter for September By: Jean Hotz (09/2005)
August 2005
Congratulations to Rebukah Palmer for winning the DEANNA LYNN POTTS SCHOLARSHIP for 2005. Provided by: Gail Potts (7/2005)
A Day In The Life Of Shawn....Is a wonderful book about a day in the life of Shawn Reuter Provided by: Holly Reuter (08/05)
Mack Maxwell's updated Workout Program with specifics for Deep Breathing Exercises By Mack Maxwell (08/2005)
The Melville family travel from the U.K. to the USA, and had a wonderful visit with the Lemar family in Oregon. Provided by: Julie Melville (08/05)
A paper written in Portuguese and describes the Brazilian multicentric study on Nephropathic Cystinosis By: Vera Koch
October 2004
Congratulations to Heidi Hughes for winning the DEANNA LYNN POTTS SCHOLARSHIP for 2004. Provided by: Gail Potts (10/2004)
Cystinosis Foundation funds extensive research on the Mouse Model (04/2004)
The Third International Cystinosis Congress in Tarragona, Spain, July 9-11, 2004 was a HUGE success (10/2004)
Julia Baxter - Julia won two medals in the Special Olympics - "Equestrian" - Gold & Silver By: Valerie Hotz (10/2004)
May 2004
Applications for the DEANNA LYNN POTTS SCHOLARSHIP are being accepted through June 2004. Provided by: Gail Potts (05/2004)
Mack Maxwell's updated Workout Program with specifics for Cystinosis By Mack Maxwell (05/2004)
Cystinosis Foundation funds extensive research on the Mouse Model (04/2004)
April 2004
20th Annual Cystinosis Foundation Family Conference In Ann Arbor, Michigan More Info to follow soon (04/2004)
Sweethearts' Balloon Rally & Fundraiser - Another Successful Weekend Held By: Dan & Holly Reuter (02/2004)
Follow-up and treatment of adults with cystinosis in the Netherlands By: Elena Levtchenko (03/2004)
Cystinosis Foundation funds extensive research on the Mouse Model (4/2004)
ÓCathasaigh's Appearance on Irish Nationwide TV broadcast (4/2004)
January 2004
Sweethearts' Balloon Rally & Fundraiser Held By: Dan & Holly Reuter (02/2004)
19th Annual Cystinosis Foundation Family Conference Summary (08/2003)
Dear Friends Letter for January By: Jean Hotz (01/2004)
"Crystal Clear - an article about the necessity and success of using the eyedrops By: Al & Seandradh Ó Cathasaigh (1/2004)
Nephrology - Dialysis - Transplantation in The Netherlands Submitted By: Dr. Elena N. Levtchenko (6/2002)
November 2003
Check out "The Cystinosis Book By: Rachel Stone (11/2003)
Dear Friends Letter for October By: Jean Hotz (10/2003)
GI Evaluation Paper Published August 2003 - The Journal of Pediatrics By: Dr. Dohil (8/2003)
September 2003
Kevin McCalla winner of the Lynn Potts Scholarship Award By: Gail Potts (9/2003)
Dr. Ranjan Dohil starts new study - Looking for volunteers Read the Details (9/2003)
July 2003
Dear Friends Letter for July By Jean Hotz
CELIAC's: Undiagnosed Food Allergies/Intolerances By: Angela McCoy
The Cystinosis Foundation of Ireland now has their own Website
Katie Swafford-Lemar - her graduation ordeal: UPDATED By: Jane Lemar
Anne-Claire Pannisset By: Anne-Claire
19th Annual Cystinosis Foundation Family Conference La Jolla, California
2003 Midwest Cystinosis Family Gathering Springfield, Illnois
Orphan-Europe has put together an excellent "Guide" for Parents, Patients, and Healthcare Professionals By: Orphan-Europe
Announcing our new MESSAGE FORUM, please join and help us support each other
June 2003
Katie Swafford-Lemar - her graduation ordeal By: Jane Lemar
Anne-Claire Pannisset By: Anne-Claire
May 2003
Barry Beard speak to the Genetics class at Penn State University By: Barry Beard
Mack Maxwell share his workout program with us By: Mack Maxwell
Belinda Broughton's Letter to the Cystinosis Community By: Belinda Broughton
Louise Stephan's Life Story By: Dr Mignon Moyle
Dear Friends Letter for May By Jean Hotz
April 2003
A Special Valentine's for Amanda James and Darlene Wedding
The Abstract Book from the Cystinosis Foundation International Conference In Paris, France is now available. Click Here.
The Cystinosis Foundation of Australia now has their own Website founded by: Sue and Serena Scott
CVS ProCare Pharmarcy Updated Information Page By CVS ProCare
March 2003
10th Annual Sweetheart's Balloon Rally held by: Dan & Holly Reuter
The "Sweethearts Balloon Rally" Auction held by: Dan & Holly Reuter
Maple River School - "Pie in the Face" Fund Raiser held by: Holly Reuter and the Maple River School
Naíonra Playschool Cake Sale Fundraiser by: Al & Seandradh Ó Cathasaigh
Dear Friends Letter for March By Jean Hotz
The Abstract Book from the Cystinosis Foundation International Conference In Paris, France is now available. Click Here.
The Cystinosis Foundation of Australia now has their own Website founded by: Sue and Serena Scott
January 2003
10th Annual Sweetheart's Balloon Rally and Fund Raiser - Hosted by: Dan & Holly Reuter
December 2002
International Cystinosis Conference in Paris, France - Pictures and Summary
18th Annual Cystinosis Foundation in Chicago, Ill - Summary by Carl Schleuter, Ace Reporter
"The Faces of Cystinosis" - Hosted by: Jeff & Nancy Stack
September 2002
Gloria and Ariana Ramos - Bank of America's United Way Campaign - By B of A Reporter Gordon Turner
Meet Kelly Horvath - By Kelly
August 2002
Gloria and Ariana Ramos - Bank of America's United Way Campaign - By B of A Reporter Gordon Turner
Barry Beard - By Barry
Dear Friends Letter for July- By Jean Hotz
July 2002
2nd International Cystinosis Foundation Conference in Europe - Picture Slideshow is Available
18th Annual Cystinosis Foundation Family Conference - July 25-27 2002
June 2002
Meet Krista Kosbab - By Krista
Dear Friends Letter for June- By Jean Hotz
2nd International Cystinosis Foundation Conference in Europe - June 28-30, 2002
18th Annual Cystinosis Foundation Family Conference - July 25-27 2002
May 2002
MedEx Questions and Answers - Do you have questions you would like our panel of experts to answer?
Meet Mikaela Marie Gard - By Eric and Dena Gard
18th Annual Cystinosis Foundation Family Conference - July 25-27 2002
2nd International Cystinosis Foundation Conference in Europe - June 28-30, 2002
APRIL 2002
M.A.D. is Making A Difference for Cystinosis Research - Founded by: Jamie and Jill Georgeson
Dear Friends Letter for April- By Jean Hotz
18th Annual Cystinosis Foundation Family Conference - July 25-27 2002
2nd International Cystinosis Foundation Conference in Europe - June 28-30, 2002
FEBRUARY 2002
Meet Reuter Family Story - By Dan & Holly Reuter
Annual Hot Air Balloon Fund RaiserFund Raising - By: Dan & Holly Reuter
Dear Friends Letter - By Jean Hotz
18th Annual Cystinosis Foundation Family Conference - August, 2002
2nd International Cystinosis Foundation Conference in Europe - June 29-30, 2002
JANUARY 2002
U.S. Cysteamine Eye Drop Development Current Research - By: Sigma-Tau Pharmaceuticals
DECEMBER 2001
Update on Prilosec Study Current Research - By: Dr. Dohil
Gift Wrap at Barnes & Noble Fund Raising - By: Louise L Limacher
CHAT SESSION WITH CVS ProCare Reps - Was Postponed - Check back for new date
NOVEMBER 2001
People & Places - The Carroll Family - By: Louise Limacher
People & Places - Valerie Zakrzewski - By: Mike & Lani Zakrzewski
THE 17th ANNUAL CYSTINOSIS CONFERENCE - SUMMARY UPDATED
OCTOBER 2001People & Places - Mack Maxwell's trip to Mexico to Visit Victor Gomez - By: Mack Maxwell
October 2001 Dear Friends October 2001
People & Places - Cheyenne Cooper - By: Tara Lee
Update on Research - by Dr. Jess Thoene October 2001
THE 17th ANNUAL CYSTINOSIS CONFERENCE - SUMMARY UPDATED
SEPTEMBER 2001People & Places - Steven Schleuder - By: Carl Schleuder
People & Places - Victor Gomez- By: Victor Gomez
Victor has announced this month that he is founding the Cystinosis Foundation - MexicoTHE 17th ANNUAL CYSTINOSIS CONFERENCE - SUMMARY UPDATED
AUGUST 2001People & Places - Anne-Claire Panisset - By: Anne-Claire
Dr. Sarwal, Stanford Medical Center is gathering data to analyze patterns of care and monitoring of patients with cystinosis after kidney transplantation Click Here to fill out the Questionaire
August 2001 Dear Friends August 2001
The Champion By Steve Schleuder August 2001
THE 17th ANNUAL CYSTINOSIS CONFERENCE - SUMMARY
JULY 2001Lynn Potts Award July 2001
Dear Friends Letter July 2001
THE 17th ANNUAL CYSTINOSIS CONFERENCE IS TO BE HELD IN LAS VEGAS, NV.
JULY 16, 17, 18, 19, 2001 General Information and On-Line Registration
MAY 2001People & Places - Kimberly Riedel's Life Story - By: The Riedel Family
Dear Friends Letter May & June
THE 17th ANNUAL CYSTINOSIS CONFERENCE IS TO BE HELD IN LAS VEGAS, NV.
JULY 16, 17, 18, 19, 2001 General Information and On-Line Registration
APR 2001Dear Friends LetterFrom Jean Hotz, Foundation President Drs. Schneider and Dohil are looking for patients who might be interested in participating in Gastro Study, to see if Prilosec can help Cystinosis Patients who have trouble tolerating Cystagon. Also, an update on the Mouse Model from Dr. Thoene, the Eyedrop Study has been finalized, New Jersey Dinner Dance was an overwhelming success, there is much more.
THE 17th ANNUAL CYSTINOSIS CONFERENCE IS TO BE HELD IN LAS VEGAS, NV.
JULY 16, 17, 18, 19, 2001 General Information and On-Line Registration
MAR 2001People & Places - Victor Hanuse from British Columbia - By: Liz Hanuse
THE 17th ANNUAL CYSTINOSIS CONFERENCE IS TO BE HELD IN LAS VEGAS, NV.
JULY 16, 17, 18, 19, 2001 General Information and On-Line Registration
FEB 2001Fund Raising: New Year... Renewed Strength - By: Stephanie Gillenberg
THE 17th ANNUAL CYSTINOSIS CONFERENCE IS TO BE HELD IN LAS VEGAS, NV.
JULY 16, 17, 18, 19, 2001 Click Here to learn moreFebruary 2001 - Dear Friends Letter from the President. Click Here to read.
Book Review - By Terri Schleuder - Simple Abundance - A Daybook of Comfort and Joy . - by: Sarah Ban Breathnach
Click Here to read the entire review.
JAN 2001THE 17th ANNUAL CYSTINOSIS CONFERENCE IS TO BE HELD IN LAS VEGAS, NV.
JULY 16, 17, 18, 19, 2001 Click Here to learn moreAnnual Report to the Cystinosis Foundation - With the support of the Cystinosis Foundation we have made significant progress in the construction of an animal model for cystinosis. - Jess Thoene, M.D.
Click Here to read the entire report.
DEC 2000THE 17th ANNUAL CYSTINOSIS CONFERENCE IS TO BE HELD IN LAS VEGAS, NV.
JULY 16, 17, 18, 19, 2001 Click Here to find out more"CYSTINOSIS - YOU'RE GOIN DOWN!" The generous students at Eastside High School in Taylor, South Carolina, raise over $47,000.00 for Cystinosis Research. Click Here to read about it.
Sept 2000Through the generous donations and hard work of our Members, Families, Volunteers, and Sponsors, The Cystinosis Foundation is proud to have been able to bring to you as an extension of our FAMILY SERVICES our Conferences in:
Waterville, New Hampshire Ranica, Italy Dear Friends - October 2000 Issue has been posted....... Click Here to read it.
July 2000My Life's Story - By Mack Maxwell
Poem " Morgan Friend" - By Theresa Thigpen (Morgan's Grandmother)Read It...
June 2000Chat session with Phil Stinson, the Topic is going to be Special Education, you can learn alot about your child's right and what a School District has to provide.
Thursday, June 22nd, at 9pm EST/6pm PST
The June 2000 Dear Friends letter from Jean Hotz, Foundation President is up Read It...
The Conference in New Orleans has been finalized, and we will have details shortly, check back here for the link to the reservation form, and all the information about this years conference in the South.
May 2000Spring 2000 Newsletter has been published and is now on-line, you can read it Right Here
THE BINGER SPLASH, was just a BLAST!! Tim and Dinny Binger were hosts for the first Swim and Luncheon fundraiser Read About It...
March 2000Cystinosis Foundation Forum is a place where you can ask other forum members questions you may have or help others by answering questions they may have.
Join Here
The Cystinosis Foundation, New Jersey Chapter held its 16th Annual Dinner/Dance March 18, at the Cameo in Garfield, New Jersey. The event was a resounding success, with 350 in attendance. Read About It...
Our Chat Room is back up and Running, too..... Care to give it a try??Here is a link to an outstanding article written by Phil Stinson, published on the website SpecialChild.com (you will find a link to this website on our Library and Resources page
Question and Answers on Schools and Special EducationA Letter of Encouragement to all our Community was sent to us by Margaret Pratt
Please give it a read!
February 2000Check out our new FAQ's page, Questions and Answers to a great number of Frequently Asked Questions on Cystinosis Pre and Post Transplant...... Go To FAQs
January 2000Dear Friends Letter from the Foundation President Jean Hotz Click Here To Read
Cystinosis Conference 2000, has been firmed up and planned at the Waterville Resort in New Hampshire Click Here for Information
December 1999
Lesley Cogar's Helping Hands Fundraiser Click Here To See the Pictures
December 20, 1999Dr. Jess Thoene, Medical Advisor and recepient of a major Cystinosis Foundation Grant will have his lab installed in Tulane University the first of the year."and more in the Dec 99 Dear Friends Letter from the President.
December 15, 1999Cystinosis Foundation Auction is being planned for early 2000, and we are requesting any items you may be willing to part with be sent to the Foundation for our On-Line Auction Fund Raiser. We have some great items to bid on so far: Click here to take a look".
September 22, 1999Cystinosis Foundation brochure is now in GERMAN. Click here to read it "In German"".
February 3, 1999
Cystinosis Foundation brochure is now in ITALIAN. Click here to read it "en italiano".
Thanks to Guilano Mazzina and Mrs. Fogliada for the translation.
January 22, 1999
Muscle Weakness or Swallowing Problems?
Dr. Trauner has been studying the neurologic consequences of cystinosis for several years. She and her collegues are interested in the problems with muscle weakness and swallowing that some adults with cysitnosis ar experiencing.In particular, they are very interested in learning more about the cause of the late onset muscle weakness and swallowing problems. In order to do this, Dr. Trauner and her colleagues would like to perform neurological examinations, electromyograms, and nerve conduction velocity studies on individuals who are experiencing one or both of these problems. If you are interested, or know someone who might be interested, in participating in the testing to find out more about muscle weakness and swallowign problems, please contact Dr. Trauner's research group at (619)587-4020.
October 22, 1998
Cystinosis Medical Exchange - A question and answer program.
If you have a question regarding cysitnosis and your (child's) health, give call, email or fax. The Cystinosis Foundation is working with UCSD in this program. Please see the Cystinosis Medical Exchange page for more info.
September 9, 1998
Cystinosis Foundation brochure is now in FRENCH. Click here to read it "en français".Look for a SPANISH translation soon...
August 26, 1998
Cystinosis Foundation, U.K. & EireCurrently work is being done to begin a foundation for cystinosis patients in the United Kingdom. Jonathan Terry, an adult cystinotic, is working with physicians in England to promote the Cystinosis Foundation in the U.K.
For more information contact:
Jonathan Terry, Founder
Cystinosis Foundation, U.K. & Eire
174 Corwen Road
Tilehurst, Reading. RG30 4TA.
EnglandWebsite: http://www.cystinosis.org.uk/
Email: jonathan.terry@cystinosis.demon.co.uk