All posts by admin

Second European Meeting on Acromatopsia and blue cone Monochromacy april 9, 2022

Associazione Acromati Italiani and BCM Families Foundation is pleased to invite you to the second European Meeting on Achromatopsia and Blue Cone Monochromacy which will take place on April 9, 2022 in Mestre NHVenezia Laguna Palace, via Ancona 2, Mestre Venezia.

To participate in the Meeting it is necessary to register and no participation fee is required.
Click here for registration

The NH Venezia Laguna Palace hotel is an hotel in Venice-Mestre. The hotel enjoys a great location 5 minutes from the Mestre train station, and is just 10-minute by car or by bus from the city’s historical center.

  • 10 minutes from historical Venice’s sights by car or by bus
  • 5 minutes from the train station
  • 15-minute drive from Marco Polo Airport

First European Meeting on Acromatopsies and Monochromatism of the blue cones

Associazione Acromati Italiani is pleased to invite you to the first European Meeting on Achromatopsies and Blue Cone Monochromacy which will take place on October 20/21, 2018 in Mestre, (Venezia) Italy at Russott Hotel.

The protagonists of the Meeting will be the Presidents or representatives of the European Achromats Associations. Participation in the Meeting is a chance to compare, learn, develop projects and make concrete commitments to achieve greater visibility that will see us united in marking the path for future gene therapy.
We would like to listen to your experiences as an association of patients in your country and, in this regard, we invite you to write a report and present it during the days of the Meeting.
The Meeting also wants to compare experiences between achromats and Italian and European families, reflect on the various paths and eventually formulate new proposals, keeping in mind that together we are rare but we are many.

Speakers will be:
Dr. Susanne Kohl – Institute for Ophtalmic Research – Tuebingen University, Germany
Dr. Cristiana Marchese – former Medical geneticist at Ordine Mauriziano – Turin, Italy
Dr. Renata Sarno – BCM Families Foundation – President
Italian and foreign oculists and orthoptics

To participate in the Meeting it is necessary to register (click here to register) and no participation fee is required. Program and indications for registration will follow shortly.
Remaining at your disposal for any further clarification, I send you the best greetings hoping of being able to meet you in Mestre.

2017 ACHROMATOPSIA CONVENTION July 21-22

http://achromacorp.org/Events.html
Location: Medical College of Wisconsin, Health Research
Center, 8701 Watertown Plank Road, Milwaukee, WI 53226
Presenters List: Dr. Susanne Kohl
http://www.eye-tuebingen.de/wissingerlab/members/susanne
-kohl
Dr. Shannon Boye
http://boye-lab.eye.ufl.edu/about-dr-boye/short-bio/
Dr. Christine Kay
http://vra-pa.com/dr-christine-kay/2720286
Dr. Joseph Carroll
http://www.mcw.edu/AOIP/Team/Faculty/Joseph-Carroll.htm
Dr. William Hauswirth
http://research.eye.ufl.edu/researchers/research-faculty/
william-w-hauswirth-ph-d/
Dr. Susanne Kohl
Dr. Shannon Boye
Dr. Christine Kay
Dr. Joseph Carroll
Dr. William Hauswirth

Representative from Applied Genetic
Technology Corporation (AGTC)
https://www.agtc.com/
Additional Sessions -more will be added as information becomes available
-check back!
– Eva Goluza-Eva (age 16) is an active alpine skier who lives in Croatia. She has successfully competed in Europa and World Cups and she is already a confirmed candidate to race in March 2018 at the next Paralympic Games in South Korea. Eva will present details about her successful skiing experience.
– John Gibson-Specialty Tints (CA)
John will discuss his unique process for hand-tinting (multiple darkness levels) disposable contact lenses and provide information for those interested. He will also be bringing several demo lenses for a first-hand look at them! This session will be part of a larger session (featuring multiple folks) focused on discussing creative solutions to frustrating problems with glasses, goggles, tints, contacts,
etc. with the overall goal of providing useful information that you can incorporate into your repertoire of tools!
***For the airport shuttle information (to and/or from the airport) we recommend GO Riteway:

Homepage


The cost for a single person is about $24 each way. It is about $30 each way for 2 people traveling together, so about $6 increments per person for family traveling together after the first $24.

HOTEL INFORMATION FOR THE 2017
ACHROMATOPSIA CONVENTION July 21-22
Convention Location: Medical College of Wisconsin,
Health Research Center, 8701 Watertown Plank Road,
Milwaukee, WI 53226
The room block is confirmed
for July 20 – 23,
2017 at the following hotel: Radisson Milwaukee
West 2303 North Mayfair Road Wauwatosa,
WI 53226
To book directly with the hotel, please call 414-257-3400 and ask for the Reservation Department. Be sure to reference the block name “Achromatopsia Convention” to ensure you receive
the group rate.
To book online, please visit our website at www.radisson.com/milwaukeewi_west
and use the promotional code “MRMC17” when entering your travel details.
The group rate of $105 is guaranteed until 6/30/2017. After the cut-off date all unreserved rooms will be released into the hotel’s general inventory and will no longer be available to reserve at the group rate.
Shuttle service to and from the convention location will be available at no cost to from the Radisson Milwaukee West both Friday and Saturday.
Additional hotels and area information can be found at:
http://www.mrmccampus.org/resource-guide

BCM Families Meeting Atlanta, GA (USA) – August 4-6th 2017

The first international meeting of families affected by Blue Cone Monochromacy will be in Atlanta, GA (USA) – on August 4-6th 2017
Location will be OMNI Hotel Atlanta at CNN CenterWeb Site – 100 CNN Center Atlanta, Georgia 30303 USA, Phone: (404) 659-0000 – Concierge: (404) 818-4406.

Meeting Program
Friday 4th – Late afternoon –
Participants Registration and Welcome – Location TBA
Saturday 5th – Full Day – We are organizing a full day of lectures and activities – Maple Conference Room
Sunday 6th – Morning until lunch, Half Day – Lectures and activities – Maple Conference Room
We are inviting scientists and researchers who have been working on BCM for decades, as well as Low Vision experts. Much opportunity will be given for participants’ questions. Social activities and patients’ talks will be organized. A meeting AGENDA is coming soon.

Food and Beverage
Saturday and Sunday Breakfast and Saturday Lunch will be offered in the Atrium Terrace B.

Children
Children under 12 are welcome. A nanny service will be organized in the nearby Spruce Room (Max 60 children).
Mature teenagers who wish to hear the educational presentations will be welcome at the discretion of their parents or guardians.

Accommodation
We have a limited number of discounted rooms (50) at our disposal, a limited seating capacity in the conference room (100 participants) and in the children’s room (60 children under-12), so please register as soon as possible. No conference enrollment fees are being charged, plus those who have difficulty affording to attend may apply for a scholarship. Scholarships will be awarded with priority to people coming from abroad who are members of our forum (ning.bcmfamilies.org) and/or Facebook ‘BCM’ group. Then any other scholarship application, based on financial need from a member of our forum and/or Facebook group, will be considered. Scholarships for up to 50 hotel rooms can be provided.

Scholarship
Scholarship means that BCM Families Foundation will pay for the scholarship recipient’s Omni hotel rooms from August 4th to August 6th plus taxes. Any other hotel service and extra charges will be paid by you. Your hotel reservation will be guaranteed by your credit card and needs to be done before June 1st. If you cancel after this date or if you do not check into the hotel, then the whole cost will be charged to your credit card (rate is $ 149 per night per room + 16% taxes + $5 per night). After your hotel check-in, if you requested a scholarship and the scholarship was approved, then BCM Families Foundation will pay for your room.

I professori invitati sono

W.W. Hauswirth, S. G. Jacobson, B. Wissinger, E. BuenaAtienza, M. Michaelides, A. Hardcastle, J. Gardner, J. Carroll.

In programma anche i prelievi di sangue per chi deve fare il test del DNA e la presenza di un istruttore di guida con il bioptic.

SEGUITE GLI AGGIORNAMENTI E INFORMAZIONI SU :
http://www.blueconemonochromacy.org/atlanta-2017-meeting/