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Dent disease is on facebook!

LadaBL Message
18 Aug 2011, 11:29 PM

I would like to share with all starting the Dent disease page on facebook. We have uploaded video with Dr. Lieske talking about Rare Stone Disease Consortium and Dent disease. Just open facebook and type: Dent disease. We were very busy this month and we have submitted a review on 4 rare stone diseases we are studying, including Dent disease. I will let you know as soon as this review is published. We plan to populate our facebook page with some images related to Dent disease and relevant information. We also have good news, 2 major centers, one in the US and one in Korea have become our official users and they will share with us protected information of their Dent patients. Our numbers are increasing steadily!!! Celebrate progress, enjoy summer and drink plenty of fluid! Lada
Mamacassidy Message
23 Aug 2011, 02:43 PM

Thank you Lada...for all you do...especially with Dent's. Our family truly appreciates your efforts and your communication.
LadaBL Message
24 Aug 2011, 06:29 AM

Thanks. Your feedback encourages me to do more. Lada
minu Message
1 Sep 2011, 04:31 PM

Hi Lada. These are great news. Just for your info, I am doing a Kidney March this coming weekend (September 9-11). Look into www.kidneymarch.ca for more info. It is 100 kms. walk in 3 days, camping overnight. Although my son "graduated" from the Children's Hospital last year as he is now 19 years old, I was invited to join the KIDney KIDS team. Will try to find out if there are any other families affected by Dent disease. I believe Daniel is the only one in our area, but I could be surprised.
LadaBL Message
2 Sep 2011, 03:15 PM

That's great Minu! Also a big commitment. It would be a good way to meet more Dent families. Lada
minu Message
24 Nov 2011, 05:50 PM

Hi Lada. Hasn't been any activity on the Dent's page for a while! My mother lives in the US and is buying a new car, which comes with a $250 donation to any charity of her choice. I don't know if it could be the Canadian Kidney Foundation. If it has to be a US based charity, she wishes to donate towards kidney disease , to the one that has more chance of helping my son (her grandson) and Dent's disease. Which would you recommend? Thanks
LadaBL Message
24 Nov 2011, 11:40 PM

Hi Minu, You are right not much activity on the Dent site but it does not mean not much activity with Dent. I will create a special entry to post Dent updates today. Regarding charity, it is hard to recommend anything specific for Dent at this time, unfortunatelly. US has a National Kidney Foundation as a kidney foundation. See if they accept donations. For the future of Dent, I think that Dent parents should start a patient advocacy group. It can be structured to accept donations. Lada