Hi everyone.
I recently had a lengthy phone conversation with Professor Linda Greensmith, head of research on KD, at University College London, regarding KD research in the UK. We discussed the possibility of a UK patient Register for KDrs, and from that list some involvement from our group in her research on KD. We also discussed holding twice yearly conferences and either herself or a lab colleague could attend, similar to the ones held by the KDA. Her research to date can be found on the UCL website, and two more papers are being submitted for publication in the next few months.
This is really exciting news for us in the UK and we are now making plans to start fundraising to help support Professor Greensmiths research. Our focus to date has been on raising funds for our awareness campaign. The success of the RGA2013 Alps Tour cycling event has raised more than we need to go ahead and complete that task.
On a more personal level I found Professor Greensmith to be well informed and concerned about many aspects of those affected by KD, including the effect it has on carers and families. Other topics included Anaesthesia, adverse drug affects, early diagnosis, and even IVF. It was a very long phone conversation and when it was over I just sat and stared for a while. All I could think of was: Tissue samples, microscopes, scanning machines, white coats, test tubes, meeting other KDrs face to face, and the journey ahead. I am so looking forward to the prospect of developing an ongoing relationship between her dept at UCL and our group here in the UK.
Our Facebook group has shown a lot of interest at the thought of being involved in research. Many have shown their appreciation by thanking me and that is nice, but really it only took a phone call. OK it took me 18 months to find someone in the UK that had an ongoing interest in KD but again it was just computer research. My reward is being just a part of what we are all trying to avchieve. Incresed Awareness, Treatment or even better, a Cure.
Best wishes to you all.
Eric.

Hi Eric. As I have said elsewhere congratulations on this wonderful achievement. Thanks for posting this info on this sight, others might see it and join our group. All your local team have worked so hard to get the group where it is in such a short time. Well done to you all - Thank you.
Graham.

More good news.
We have been granted Charitable Status from HMRC. We have to thank our Treasurer Karen Williams for all her time and efforts in dealing with HMRC. Well done Karen from us all at KDRA.

Well done Karen. Thank you.
Graham.

Great news, Eric. Karen, you did great work.

Hi everone.

Just here to update our progress regarding our involvement with research at UCL London UK.

13 males from our Facebook group have put their names forward and we are now waiting for UCL to get back to us.

They need to collate all our information and have to seek Medical Ethic approval from our Neurologists.

This will take some time but at least we know it is going to happen fairly soon.

It will also be an opportunity for some of us to meet up for the first time. Apart from my daughter and my sister who

are carriers, I have yet to meet somenoe else with KD.

Best wishes to you all.

Eric

Well done Eric and your team. You have achieved such a lot in such a short time. What we need now is for the our enthusiasm to be maintained. I do hope that there is not a long delay whilst we await developments. I look forward to our meeting with as many members as possible, when the arrangements are made. Thanks again to you all.
Graham.

Hi everybody.
Im here today just to vent really.

The original ethics which were writen regarding the Research and Clinical Trial at UCL (UK) did not include Patient Selection
from Social Media Groups like Facebook. The actual wording stated that patients would come from a list provided by NHS Consultants who had seen KD patients. The Ethics are now being re-written to include Selection from Patient Organisations/Groups such as ours.
This may, or may not be acceptable to the Select Comittee responsible for Ethical Approval. We have to wait and see.

My Vent point is we provided 13 males with KD and all very willing to take part.
My question is, Why didn't our Consultants refer us when the original Research and Clinical Trial was first announced, or
afterwards when we became known to our consultants.
If the additional Ethics are not approved then it will mean that UCL will have to contact our consultants and request they refer us.

My own Consultant specialises in MS and Epilepsy. Maybe his interest in KD is of a low priority. I know when I asked for my CAG repeat I was told by his secretary that he 'Doesn't' bother with things like that. I contacted the lab personally and was told to see my Consultant. I finally did manage to get it through The Genetics Counselling Service which I had to self refer to.

Lets hope the new charter for rare diseases, just released in the UK , will help people like us in the future. 'Rare Disease UK' have all the details but basically it is about creating better awareness, better treatments, more research, better follow up care, and earlier diagnosis for those with rare diseases. It is worth a look and well featured on the Rare Disease UK website.

I'm just hoping this issue can be resolved as soon as possible. Several of us were getting excited about the chance to be involved and to meet others with KD. This has put a bit of a dampener on our progress.

Many thanks for listening.

Best wishes.

Eric

Eric, it is always good to hear from you. It seems that the life of a KD'er is often filled with various disappointments. Thankfully, we have HOPE to carry us through these times. It is also a time to look at possible opportunities ... including ones that might create change.

It is our Thanksgiving tomorrow. I want to thank all of you who live with this condition (individuals, spouses, significant others, family members, and friends). Thank you for your help, support, kindness, friendship, and your prayers. Together we do make a difference.

Thanks Bruce.
You are right we always have hope. Hope you all have a great Thanksgiving.

Best wishes'

Eric.

A happy thanksgiving to all our American friends.
Well said Eric,hopefully things will change in the future.
Best wishes to all.
Graham.

Hi everyone. Great news!
The Ethics problem regarding patient selection from Media Groups for research, has been resolved. I don't have the details, but the research at UCL into KD can go ahead. We are awaiting the necessary paperwork and consent forms to arrive from UCL for those who are selected from our group. Good to be moving ahead once again.
Our website is down at the moment. It's no longer fit for purpose so we are having a new one built from scratch.

Best wishes to you all.

Eric

Eric. Your efforts have been rewarded at last, keep at it you will make it happen. I am sure everyone is looking forward to the new website.
Graham.

Thanks Graham.
We received the KDRA Client Questionaire yesterday from Websolve. 8 pages. Once this is completed all the info about layout, links, and number of pages is put on to a wireframe as a map of how the site will look. This takes 2-3 weeks. Round two then for KDRA to populate the pages with Photos, tabs,slides and all the info for a credible KD website. Lots of tweaking on the way apparently. So glad we are with a Co. that understands I am a complete novices with websites.
Best wishes to you Graham.

Eric