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Dent Asociation

EvaK Message
27 Mar 2015, 05:52 PM

Hi all, I write you because I want to share with you the information about Eva, very strong mother of Nacho who has Dent`s disease. Eva is trying to collect money for start investigation and find the cure for this disease. She is founder of, the asociation. Hope it could help you to share your experience and support. I saw that some members were writing in Spanish, if you want I can translate. You can contact me: Trailer for the document: Regards Eva
minu Message
1 Apr 2015, 04:06 PM

Hi, Eva. I couldn't open the link you sent. But as I also speak Spanish, I went into the Dent website of Eva Jimenez (nacho's mom) in Spain: She has even produced movies about her experience. One film "El Reto de Eva", is presently airing in various movie halls in Spain! Wondering if we should partner at one point with Dent organizations in other countries, such as this strong woman's initiative? If so, I can also serve as translator.
minu Message
1 Apr 2015, 04:35 PM

If I understand well, Eva Jimenez, Nacho's mom, has fundraised enough money to presently start research for a cure for Dent disease at the Vall d'Hebron university hospital in Barcelona. Any interest for Mayo Clinic's Rare Kidney Stone Consortium to partner with doctors/research team at Vall d'Hebron Hospital in Spain?
LadaBL Message
2 Apr 2015, 12:40 PM

Hi, I'm very, very impressed with asdent and the mother Eva who started the effort! My very basic Spanish is a limitation for me to communicate. We are establishing a partnership with Dr Hema Ariceta who represents Spanish Pediatric Nephrology. We are in the process of making Spain our active coordinating center. I am currently really struggling to get Dent patients enrolled in my FGF trial. So we actually have money but lack of Dent patients who are willing to participate, which is really sad. Breaks my heart! I'll post something about the study later today. No people willing to give time and effort - no results :( Best to all, Lada
EvaK Message
2 Apr 2015, 01:20 PM

Hi Minu and Lada, Yes, it is really impress, all activities that does Eva Jimenez. Now, here in Barcelona there are a lot of people involved, celebrities also. And lot of events related,as "vermut solidario" - 12/04/2015, will participate and contribute many people. I know that Eva signed the contract for start investigation here, as said Minu. So, I will share this information with her and the investigation team. Hope we can help and establish some important partnerships! Thanks for your feedback.Keep in touch
minu Message
2 Apr 2015, 02:56 PM

Yes, it is sad Lada. I believe Daniel does not qualify; if not I am sure he would gladly participate. Hopefully people will step up. We cannot do much progress without studies. What are the requirements (GFR, age, etc.) again for your FGF trial?
Sissief Message
3 Apr 2015, 04:33 AM

Lada, What do you need for this study.... Very curious
LadaBL Message
3 Apr 2015, 11:02 PM

This study has 2 different of groups of Dent patients. 1. Children <18 y/o will only have the following: A. 1 week of food diary B. 1 24 h urine collection C. 1 blood drawing Really not too much, I think. The purpose of the study is to see if children have abnormally low levels of phosphate controlling hormone which would indicate low bone phosphorus and possibly need for supplementation, in particular if they have growth delay. This could also lower urine calcium and eliminate need for thiazide diuretic, which is not well tolerated. 2. Second group is adults They have to have still pretty good kidney function (that is a big limitation) GFR has to be above 40, and they have to have normal parathyroid and thyroid hormones. The adults would have the same measurements as kids at the beginning, then they have 2 weeks of phosphorus supplementation, followed by another set of measurements to evaluate the effect of phosphorus. So far we have done the study on 4 adult Dent patients. 3 had very low levels of phosphorus controlling hormones which improved after phosphorus supplementation and the calcium in the urine went down. One that did not have this, has a very mild form of Dent. We have also studied 10 calcium kidney stone patients (it was much easier to enroll them). They behaved differently from Dent patients. I think this study can potentially be very beneficial, especially for children and that's why I CANNOT give up! Thanks for your support Lada
Kiwi Message
5 Apr 2015, 04:24 AM

Do you need the participants to be in the states. We are in New Zealand and the kids from our family probably qualify. Kids very high calcium in urine and some not able to tolerate the thiazides diuretic that has been prescribed so currently only on the ace-inhibitor for protein. Very interested in your phosphorous results
EvaK Message
5 Apr 2015, 12:39 PM

Hi Lada, Thanks for your specifications about patients you need. I have already share this information with Asdent. I am waiting the response. I will inform you. Thanks
LadaBL Message
6 Apr 2015, 08:54 PM

Thank to both! We are restricted financially for now to the US, but as Spain becomes our coordinating center, we could expand this protocol to Spain as well. Lada
minu Message
7 Apr 2015, 04:17 AM

And again, Lada, if you need any translating or interpreting between Spanish and English please feel free to use me any time. Daniel should be somewhat able to help too.
LadaBL Message
9 Apr 2015, 02:33 AM

Thanks as always! Hope to see you in NY in October!
EvaK Message
12 Apr 2015, 02:17 PM

Hi all, I have response from Asdent, they are already in contact with Mayo Clínic, so I hope your collaboration will be great for both. Big hug