The continuing success of the CLL Support group at HealthUnlocked and HU director cycling to raise funds for CLLSA

The continuing success of the CLL Support group at HealthUnlocked and HU director cycling to raise funds for CLLSA

Dear friends

On Thursday I visited Healthunlocked in London for an admin workshop to explore with the HU management team their current workflow, commitment and future plans in supporting our community and all those on the HU platform. You will be pleased to learn that our CLLSA CLL support community here at HealthUnlocked remains one of the most successful exemplars of what can be achieved to help people live with their condition. This is a result of your work together as members of this community to help each other. Well done everyone. Your work and challenges are recognised by HU; although we are a small group your participation in our community has raised the profile of CLL and the needs of this community. .

HU have told me that they remain committed to ensuring our needs and experience are considered in their development pipe line. The community admin team and CLLSA will be working with HU over coming months to improve access to information and will keep you informed of potential new releases and planned improvements.. I am personally encouraged that HU are recognising the contribution of this community when considering their future plans and sustainability.

On that note HU have undergone a significant expansion of personnel working on their initiatives and their team size has trebled along with investment in the past year towards ensuring a sustainable future of the resource and services they provide us.

You may be encouraged to know that Phil Golz an HU director has chosen CLLSA as the charity he will be supporting in his own personal cycle fundraiser in two weeks, when he takes part in the Prudential Ride London event on the 30th & 31st July prudentialridelondon.co.uk Please spread the word and circulate,

Phil's justgiving donate to CLLSA page can be reached here: justgiving.com/fundraising/...

It seems only yesterday when a core group of us came together here at HU three years or so ago to start an on-line support group for those affected by CLL, to help us each connect, learn together and provide each other much needed support. CLL is a rare cancer and we have many challenges not least being heard and understood, so many of us often feel our needs are not prioritised in our care and information provision, Well our group here are helping to change this and are making a difference not only in helping each of us live with CLL but making others aware of our needs.

Please all pat yourselves on the back, for what you are achieving at a personal level and as a group. Neil I would like to take this opportunity to thank you for dedicating so much of your time with everyone and your part in our group’s success and the safety of everyone posting.

Thank you

Nick

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  • As one of the original core group who was involved with the start up of this community but now an ex volunteer, I don't expect any thanks...

    However, I think too often the hard work that the current volunteers put in here, is overlooked and I think they deserve both thanks and recognition. They have continued to support others; finding info, providing advice and posting links, whilst dealing with their own troubles. They've also coped with the many problems surrounding HU upgrades and tech issues etc. Without their dedication, this community would not be so successful.

    So I'd like to thank them for all that they do.

    Cheers Volunteers 😀😀😀

    sparkler x

  • Well said the success of this group is down to the hard work and commitment of a great many members, Yes thanks Volunteers for all your hard work and thanks to all contributors who are really non-badged volunteers, we are all supporters of each other and in this together, We have persevered through the good and bad times together, the development and teething problems of the platform's developments and different incarnations and it is by remaining engaged with HU and working together that the group is what it is today., A testament to the determination of us all to make this work to help each other no matter what difficulties are thrown at us at times..

  • In the early days, without this site,I would have been completely floundering. I would like to add my heartfelt thanks to the administrators, volunteers and members of this group who made such a difference to me in the beginning when I felt completely alone. Also to the people who still take time to contribute even when they have no need of support themselves. The knowledge that I have gained makes the future a little less scary whichever way my journey takes me.

    Peggy

  • A huge thank you from me to the volunteers. It is clear how much time they spend researching and learning so that they can pass on their knowledge and give advice and reassurance. You are amazing x

  • Thanks so much to ALL involved with keeping this site up and running. Thanks is really an insufficient word for all the education and and support we get through the information we find here! A job very well done. We salute you!!!

    BeckyL

  • There are people on this forum who contribute in very obvious ways - those equipping us with information from clinical trials to interpreting blood test results, from lists of specialists to infections - from travel insurance to anxiety control.

    Our voices are stronger because of the knowledge you have passed on to us in laymen's terms. I cannot list you all - but you know who you are - and we thank you.

    I go as far as to wonder if some lives have been extended due to a timely reminder here or some advice that sends us to the doctor sooner rather than too late.

    And whilst we especially thank them - let us thank each other - for even the first time poster who shares his/her worries is reassuring others that it's okay to be afraid.

    We are not alone on our cll journey. And long may this forum continue so that we can help each other until the battle is won.

  • The help and support I've received through this group in a few short months is immeasurable! I fear I may have been on some sort of anxiety medication without it. Just having "real" people share their information and answer my many questions is a life-saver.

    Thank you to everyone involved with CLL through HU!

  • Everyone has put it so well what this site means to us all. It has been an absolute lifeline to me and I don't know how I would have coped without it. I felt so isolated when first diagnosed 6 years ago with this rare cancer and have found a lot of comfort, hope and reassurance from everyone on here.

    Thank you to all of you!!

    Rachelx

  • I can only echo the comments of all those who have already posted. A big thank you to all.

    Maureen

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