Contact:
Donna Appell, President, HPS Network
(516) 922-4022 or dappell@hpsnetwork.org
Chris Fenlon, Tel: 01442-399822, Skype: chris.fenlon1, Email: bigrevschris@btinternet.com
Date: July 21, 2010
FOR IMMEDIATE RELEASE
Chris Fenlon appointed regional coordinator of the HPS Network in the UK
Oyster Bay, New York - Chris Fenlon has been appointed regional coordinator of the HPS Network in the United Kingdom. In recent years a number of families from the United Kingdom have sought testing for, and been diagnosed with, Hermansky-Pudlak Syndrome or HPS. It is the hope of the HPS Network that we can better serve these families and individuals by having a coordinator based in the United Kingdom.
HPS is a rare form of albinism that causes a bleeding disorder, and in some genetic mutations other health complications such as a Crohn’s-like bowel disease and pulmonary fibrosis.
The HPS Network believes that HPS is under diagnosed around the world. Many who are diagnosed with a form of albinism are never tested for HPS.
As part of his outreach and support role, Chris has attended a number of social meetings of the UK’s Albinism Fellowship (AF) with the aim of reaching families and individuals who have little or no knowledge of HPS, but may have this condition. AF members have been interested to find out more and have welcomed the opportunity to discuss HPS. Chris hopes to attend the meetings and conferences of other support groups where there is a clear link with HPS or the possibility for working together for mutual benefit. He will also follow the outreach model of the HPS Network in the US of attending relevant medical conferences in such fields as pulmonology and hematology to raise awareness of HPS in the medical community.
At the current time the UK lacks clearly defined diagnostic and referral routes for the testing of HPS. HPS testing is carried out in hospital hematology departments known as Comprehensive Care Centers (CCC’s).
One of Chris’s major goals is to outreach and work with the medical community, a) to develop clear protocols for the testing of HPS in the CCC’s and, b) to work towards the designation of a specialist centre for the testing of HPS that can then act as a center of excellence for HPS. Because of the low diagnosed incidence of HPS within the UK and Europe, knowledge of HPS is patchy even within these specialist centers.
By working closely with the CCC’s Chris hopes to use this as a bridge to reach people who have been diagnosed with HPS by doctors at the centers but are not aware of the services offered by the HPS Network.
Chris has held a variety of posts within the fields of personnel and disability advocacy. His most recent post was as a specialist employment consultant within the personnel department of the Royal National Institute for the Blind in England. He has worked as a disabilities advocate in English local government working to improve access to services and amenities. He is currently an active member of a disabilities advocacy group in his home town of Hemel Hempstead. He has also worked as a part-time adult education lecturer in Psychology. Chris holds degrees in Psychology and Occupational (industrial) Psychology.
Following health problems, he is now seeking to retrain as a counselor and has enrolled on a course to begin in September. Chris also serves as a co-moderator for the HPS adults Yahoo! Group.
Chris is married and has two children. In his spare time he enjoys a love of music, walking in the English countryside, a good debate, and most things to do with cars.
The HPS Network is a 501(c)3 charitable organization based in Oyster Bay, New York. The HPS Network has supported families affected by HPS and promoted HPS research for the past 17 years.
www.hpsnetwork.org
Donna Appell, President, HPS Network
(516) 922-4022 or dappell@hpsnetwork.org
Chris Fenlon, Tel: 01442-399822, Skype: chris.fenlon1, Email: bigrevschris@btinternet.com
Date: July 21, 2010
FOR IMMEDIATE RELEASE
Chris Fenlon appointed regional coordinator of the HPS Network in the UK
Oyster Bay, New York - Chris Fenlon has been appointed regional coordinator of the HPS Network in the United Kingdom. In recent years a number of families from the United Kingdom have sought testing for, and been diagnosed with, Hermansky-Pudlak Syndrome or HPS. It is the hope of the HPS Network that we can better serve these families and individuals by having a coordinator based in the United Kingdom.
HPS is a rare form of albinism that causes a bleeding disorder, and in some genetic mutations other health complications such as a Crohn’s-like bowel disease and pulmonary fibrosis.
The HPS Network believes that HPS is under diagnosed around the world. Many who are diagnosed with a form of albinism are never tested for HPS.
As part of his outreach and support role, Chris has attended a number of social meetings of the UK’s Albinism Fellowship (AF) with the aim of reaching families and individuals who have little or no knowledge of HPS, but may have this condition. AF members have been interested to find out more and have welcomed the opportunity to discuss HPS. Chris hopes to attend the meetings and conferences of other support groups where there is a clear link with HPS or the possibility for working together for mutual benefit. He will also follow the outreach model of the HPS Network in the US of attending relevant medical conferences in such fields as pulmonology and hematology to raise awareness of HPS in the medical community.
At the current time the UK lacks clearly defined diagnostic and referral routes for the testing of HPS. HPS testing is carried out in hospital hematology departments known as Comprehensive Care Centers (CCC’s).
One of Chris’s major goals is to outreach and work with the medical community, a) to develop clear protocols for the testing of HPS in the CCC’s and, b) to work towards the designation of a specialist centre for the testing of HPS that can then act as a center of excellence for HPS. Because of the low diagnosed incidence of HPS within the UK and Europe, knowledge of HPS is patchy even within these specialist centers.
By working closely with the CCC’s Chris hopes to use this as a bridge to reach people who have been diagnosed with HPS by doctors at the centers but are not aware of the services offered by the HPS Network.
Chris has held a variety of posts within the fields of personnel and disability advocacy. His most recent post was as a specialist employment consultant within the personnel department of the Royal National Institute for the Blind in England. He has worked as a disabilities advocate in English local government working to improve access to services and amenities. He is currently an active member of a disabilities advocacy group in his home town of Hemel Hempstead. He has also worked as a part-time adult education lecturer in Psychology. Chris holds degrees in Psychology and Occupational (industrial) Psychology.
Following health problems, he is now seeking to retrain as a counselor and has enrolled on a course to begin in September. Chris also serves as a co-moderator for the HPS adults Yahoo! Group.
Chris is married and has two children. In his spare time he enjoys a love of music, walking in the English countryside, a good debate, and most things to do with cars.
The HPS Network is a 501(c)3 charitable organization based in Oyster Bay, New York. The HPS Network has supported families affected by HPS and promoted HPS research for the past 17 years.
www.hpsnetwork.org
Comments