We are inspired by a very successful Dent meeting in London and would like to replicate it in the US, if possible. Primary Hyperoxaluria is organizing a patient meeting in Mayo clinic in May. We could add to this a meeting for Dent patients/parents. I would like to know how many people would be interested/could come to that potential meeting. We will try to bring speakers who are experts in Dent disease and will have patient-oriented presentations. From our London experience, we realize it would be good to ask patients/parents which topics they would be interested to hear about. We are learning! Please get back to me. We have time, but would be good to prepare ahead of time, if we are going to do this. I was initially planning a meeting near Boston, however in Mayo clinic we would need to invest less as we have the facilities and resources. Happy New Year! Lada

I would just LOVE to come, but don't know how possible it is. I'll look into it!

Sounds like the meeting in England was a success. It would be great if we could come together in May at the Mayo Clinic.

Yes, let's start a New Year with a resolution to make good things happen to Dent community!

Hi, I wish we could make it. I don't think we'll be able to get 5 of us over to you this time....... for those who don't know I'm a UK parent It was great fun!!!

Lada , please let me know the details when they are worked up. I will certainly be interested in going.

Great Jay, I'm trying to see how many people would come to see if we will organize it. I'll post this on Facebook as well. It's very important that people respond because it takes time and effort and we want to invite speakers, as well. I'll give it a month and we'll see what's the interest. Lada

I also would be interested in coming. Maybe if it's over a weekend I can get out to the Mayo clinic. Please let us know.

Great! I have found out the date today, it's actually in June. Saturday 06/08/2013. I'll post on facebook as well. So far 4 people expressed interest. Will update you. Lada

I am interested in attending.

6/8 works for me. I'll plan on being there.

I am glad a date has been set, I plan on attending.

OK, 5 so far. Let's hope we can get more people interested. I have put a post on our facebook site, to email Barbara Seide to let her know. People who have "signed up" here do not have to do that. When the time comes, we'll have an official registration (no fee) to able to count the number. Lada

Hi Lada. I would definitely be interested in attending. (just e-mailed Barbara Seide with same reply). And if my son Daniel is there this summer, he would obviously be attending too.

I will plan on attending as well. I am not on Facebook (maybe the last remaining holdout) so I get all my information from this site. Please let me know what I need to proceed. Thanks so much.

No, problem, I'll keep you posted. Minu, I would love to meet Daniel. I have already talked to him on the phone, during one of our conference calls when he was in Mayo. Nice young man. Dr. Lieske said that he was very nice and very interested in the work. Deb, how about your son? Would he be interested in coming? He is such a lovely person. It would be good if we could get these bright, young men involved. I think they could do great things together. And they would have Jay to keep their company, they don't have to hang around the "old moms" (including me). Just an idea. Lada

You never know. I will ask him. Thanks, Lada.

I would like to come, but can't commit until I know if I can afford to travel. I'll try to work that out soon, if possible. I would love to bring my son, but he'll still be in school, I think, and that would make it awkward. But I"ll try to let you know soon.

Thanks, Julie. Too bad we all don't live closer, I know. Lada

I spoke with my son and he is also interested in attending with me. Please keep us posted on the details. Thank you for organizing this.

Great! How old is he? Lada

Lada, My son is 17 years old and we will be coming from California. -bdmom

Super! I'm really glad. Lada

Any news on the possible June meeting for Dent's?

Yes, we have decided to do it. June 8th! Lada

Is it is a go for sure? Because then I will probably look into buying my plane ticket sometime in February or March.

That is wonderful news indeed! I will get my reservations this month. Update on the DDF, I meet with the lawyer today to start the non-profit Dent Disease Foundation. Every journey begins with the first step. Also, while reading the other posts I see that Jay has done well on his diet of no/low protein. Good for him. So much we don't know, lots to learn. Maybe we can slow down the disease and improve quality of life until we can solve the mystery and find a cure. Sounds like a mission statement is in their somewhere. Thanks for getting the meeting in June together, look forward to it.

Exactly my thoughts! Let's find a way to slow down the disease until we find the cure. 06/08/2013 confirmed with Mayo today. So excited about the PAG! I have ordered Lowe Syndrome booklet and survey, waiting for that to arrive. We can learn from them. Moving forward. Lada

Lada, for those of us planning to attend from out of town, what are the logistics of the meeting at Mayo? Should we fly in on Friday night? Is there a specific hotel that is close to our meeting place? Is the meeting one day only so a flight home on Sunday morning is good or can we schedule a Saturday night flight? Thanks so much for all your help.

Let me find out from my Mayo colleagues. Mayo Mariott is the hotel just next to the clinic where I usually stay but there are several others. I would say it would be prudent to arrive Fri night and likely leave Sun am, but let me figure out the time of meeting, and than we can see if this can be shorter. I know they were planning a walk for Primary Hyperoxaliria patients which is optional for us, so I would say it would maybe be possible to leave Sat pm. Give me a few days to make more specific plans. Lada

Hi Lada. I've been looking into plane reservations for June and the tickets are very expensive from NY. I want to get a clearer picture of the schedule for the conference so I can figure out the correct flights and hotel accommodations. If you have any more information about the meeting, please let me know. Thanks.

We have discussed this as a group last week. The meeting will take place on Sat 06/08 in the morning. You could arrive Fri night and leave after the meeting Saturday afternoon. (there are usually flights around 4pm). We would like to plan some informal social meeting Fri afternoon. Or You could stay for a "walk" that will primarily be organized by Primary Hyperoxaluria, and leave Sunday morning. Either is fine. I'm sending a ink to hotels in Rochester: http://www.booking.com/searchresults.en-us.html?aid=336408;label=rochester-minnesota-E2xxUenIDjlYZSSmFuNvbwS18722859088%3Apl%3Ata%3Ap140%3Ap2%3Aac%3Aap1t1%3Aneg;sid=4bdc7c5767a73481ad19e59649e7b1da;dcid=1;city=20068188;redirected_from_city=1;src=city Hope this helps. Lada

Hi, I am new to this topic. I am in Yarmouth, Maine, but I plan to find a way to make it to this meeting June 8th. Valerie

That's great! We are busy preparing the itinerary and it's good to know how many people will be coming. Thanks Lada

Dear all, We are getting closer and it's becoming more exciting! We have the tentative plan which I am posting but the program on the 06/08th will have some changes and we did not specify Dent program yet, so ignore that. We will have the social meeting on Fri which can be both very useful and fun and then some common lectures with Primary HyperOxaluria Foundation after which we will brake out in Dent group. Our idea was to give presentations which will also be interactive and will allow participation of all. A am also making a patient survey which will supplement the registry data. Would you like to get it prior to travel or would you like to get it on Fri? I would like your feedback. My travel arrangements are done! Excited to see you. Lada To Register go to http://tinyurl.com/OHF2013 Workshop Highlights: • Patient & Family Social Gathering - Friends Welcome! • Education Sessions • "Walk for Kidneys" - A Fun, Inspiring Fundraiser To End Rare Kidney Stone Disease • Lunch, refreshments and snacks will be provided throughout the day. Friday, June 7 5:00 - 6:30 Meet & Greet Reception – Charlton Building, Lipps Atrium Saturday, June 8 – Gonda Building, 19-105 8:30 - Continental Breakfast 9:00 - Welcome 9:30 - Rare Kidney Stones - What's the Difference? 10:00 - You Can Be Part of Research! 10:30 - Break 10:45 - Understanding the Basics 11:15 - What Does The Future Hold? 11:45 - Stepping Stones to A Cure 12:15 - Break Out Sessions 1:00 - Lunch 2:00 - "Walk for Kidneys" - Rain Or Shine 3:00 - Farewells Travel & Hotel Accommodations http://www.mayoclinic.org/travel-rst/ http://www.rochestercvb.org/stay/

Is the patient survey long? If yes, maybe I would like to have it before but not that important. If short, I can fill it out over there. Less than a month to go!

I'm working on it but should have it by the end of the week. Can send it to your email and you can bring to me. It's like a pilot, to see what would be useful and I would like to get the input of the patients/parents to see which questions they would like to ask. Whoever is interested in filling the survey and is coming to Mayo in June, please send me an email to ladabl@yahoo.com and I'll send it as an attachment. Do not mail back but rather give it to me for privacy issues. Lada

Hi guys! Here is the final schedule: PH and Dent Patient Meeting June 2013 June 7th, Friday 5:00 - 6:30 PM Patient and Staff Meet & Greet Reception Lips Atrium, Charlton Bldg June 8th, Saturday PH and Dent disease - Combined meeting 8:30 AM Continental Breakfast - Gonda 19-105 area 9:00 - 9:05 Meeting begins: Welcome 9:05 - 9:25 Rare Kidney Stones: What's the Difference Dr. John Lieske 9:25 - 9:50 Kidney Stone Treatment Dr. Candace Granberg 9:50 -10:15 Transplants Dr. Hatem Amer 10:15 - 10:30 You can be Part of Research! Mayo Study Coordinators 10:30AM Dent meeting 10:45 - 11:15 MD talks: Dr. Lada Beara Lasic 11:15 - 11:45 Dr. John Lieske 11:45 - 12.15 PAG talks: Cathy Forest 12:15 - 1:00 Daniel Gauvin 1:00 - 2:00PM Lunch 2:00 OHF's "Walk for Kidneys" Soldier Field Park 3:00 Farewells Regarding the survey, we decided to destribute it at the meeting for the feedback of the people who will be there. This has been a very interesting process and I think we can have great results for the future! Before we launch the survey, we will have to go through the administrative approvals so it will take some additonal time for the final version but I will do my best to speed it up. Lada

Great Lada. Looking forward to meeting you and everyone else. About how many people are you expecting?

Looking forward to meeting everyone!

Thanks Lada for pulling this together. Great work, looking forward to meeting you. I will attending as well. I am travelling from Atlanta.

I would say around 10? Sounds maybe like a small number, but it's a start. We had an excellent experience in London with 5 wondeful people from the UK, so I'm expecting a great meeting! I am very excited to meet some of the people I have been communicating with for quite a while. See you soon! Lada

Lada, Sadly, we won't be able to travel from Maine. There were just too many factors working against us. I'd love any information...someone had mentioned the possibility of skyping? Even if it wasn't done professionally, just a computer in the room so I could hear...It's killing me not being there. Valerie

Thanks Lada could not wait to meet you all.