Adults may be eligible to participate in this study if they are aged at least 18 , have a definite diagnosis of TSC or sporadic LAM, and a definite diagnosis of renal angiomyolipoma(AML) at least 3cm in longest diameter.There are further eligibility requirements which can be discussed in detail should an individual be interested in taking part in the study.

What is asked of you?

• Time commitment: clinic visits are every 2 weeks during the first 2 months, at least 4 weeks apart for the next 4 months, then at least 3 months apart after that until the study end,
• Your informed consent to take part once everything about participation has been explained to you to your complete satisfaction

What are the advantages of taking part?

• Early access to potential new treatment before it becomes widely available
• Close monitoring of your condition by specialists in the field
• An opportunity to make an essential contribution to research which may bring future benefit to others with TSC

For further information or an informal discussion please email us or ring 01273 696 955 extension 3541.

EXIST-2 investigates whether the same drug can shrink or slow the growth of kidney lesions in patients with TSC or LAM. This trial is still actively recruiting. To date 44 patients are enrolled on the trial, and a further 55 are needed by the end of November. UK sites so far are in Brighton, London, Cardiff, Nottingham and Northern Ireland. If you have an AML at least 3cm in longest diameter and want to find out more please email us or ring 01273 696 955 extension 3541.

This Phase II work with 28 patients in Cincinnati is a great boost for the Phase III (more extensive) trials of Everolimus currently recruiting from TSC patients worldwide:

In both trials recruitment is competitive-meaning that if the required numbers are achieved early, the chance to take part may be missed, so…

Have you considered taking part in this research?

What do you stand to gain?

• Early access to potential new treatment before it becomes widely available
• Close monitoring of your condition by specialists in the field
• An opportunity to make an essential contribution to research which may benefit others with TSC in the future

What do you need to give?

• time commitment:clinic visits are every 2 weeks during the first 2 months, at least 4 weeks apart for the next 4 months, then at least 3 months apart after that until the study ends
• your informed consent to take part once everything about participation have been explained to you to your complete satisfaction

One study focuses on patients with a SEGA-recruitment to this study is open only until 31st of July. If you have an enlarging SEGA at least 1 cm in diameter please email us or ring 01273 696 955 extension 3541.

The other study focuses on those with a kidney AML and recruitment is open until 1st December. If you have an AML of at least 3cm in longest diameter and want to find out more please email us or ring 0123 696 955 extension 3541

A message from the researcher:

We would like as many people as possible with tuberous sclerosis and polycystic kidney disease to take part, no matter where you live, and so whether you are affected yourself or looking after someone with the condition, we would be very pleased to hear from you.

The study is very simple and does not involve any face-to-face meetings. All it would involve is a short questionnaire consisting of 10 questions, consent to review medical records, and for some participants, we may ask for a blood sample to check kidney function or complete genetic analysis if this has not been done already.

The purpose of the study is to find out how the kidneys of people with this condition are affected as they get older. This will help doctors, patients and their families to understand the condition more and to know what to expect in the future.

If you are interested in taking part or have any questions, please get in touch and we will arrange to send you further information about the study and how to take part.

You can contact me until the 4^th August on 02920 744947 or email Madeleine.Heeley@wales.nhs.uk (after 4^th August, please call Hannah on 02920 744865 or email listerhr@Cardiff.ac.uk).

Many thanks for reading this.

With best wishes,

Madeleine

Dr Madeleine Heeley

Specialist Registrar in Medical Genetics to

Professor Julian Sampson, Honorary Consultant in Medical Genetics

The group meets at the Neurosupport Centre in central Liverpool from 10.00 to 12.30.

Venue: Neurosupport Centre, Norton Street, Liverpool L3 8LR

2010 Dates:

Wednesday 8th September 2010

Tuesday 2nd November 2010

In addition the group meets for a summer outing to a park or childrens farm and a Christmas meal. Everyone is welcome.

For more informaton contact us.

Following last years sucessful get together and positive feedback from our members we will be returning to the LTCAS for this years event. We have moved the date slightly so as not to clash with Haloween. This years event will be held on Saturday the 6th of November 2010.

The venue is the Long Term Conditions Alliance Hub (LTCAS), Venelaw Building, 349 Bath Street, Glasgow. Website www.ltcas.org.uk

The programme and booking forms will be sent out to our members closer to the time.

From May 2010, the ILF will only accept new applications from disabled people who have been working 16 hours or more a week. They will no longer accept applications from disabled people on low incomes who are not working, although existing recipients in this group will continue to receive funding.

In order to apply to the ILF you must be:

1. aged 16-64 and
2. in receipt of a DLA care component at the high rate and
3. have less than £23,000 in capital and
4. have been assessed as needing a package of community care services that would cost between £341-£815 per week.

For further information you can call your local TSC Adviser (contact details on the staff page) or call the contact a family helpline on 0808 808 3555 weekdays 10am-4pm and Monday evenings 5.30pm-7.30pm