Angioma Alliance

Family Conference Registration Form

June 24 – June 26, 2005

Baltimore, Maryland

Have a question? Email or call 1-757-258-3355.

Important Information – Please Save These Pages

Location: Tremont Plaza Hotel, 222 Saint Paul Place, Baltimore, MD21202

Reservations: 1-800-873-6668; Hotel Phone: 410-727-2222

Conference Program:

The times and speakers are not final. You will receive updated schedules as they become available.

Friday, June 24

  • 9:00 – 11:30 am, Tour of Dr. Rigamonti, Dr Clatterbuck and Dr. Dietz’ combined lab at Johns Hopkins with presentations explaining the basics of CCM research. As well as touring the lab facilities, you’ll get to see how DNA is extracted from blood samples, learn about cell structures and how the CCM genes are thought to affect cells, and hear about the future of CCM research. Please meet in the lobby of the TremontPlaza by 9:00 am. We will be shuttled to and from the lab. Sorry, but we will not be providing child care during this part of the conference. Older children may join the tour, but they must stay with their adult at all times and may not touch any lab items without permission. The lab is not a large space; participants who are not in wheelchairs or on scooters will need to stand during the tour.
  • 11:30 am – 12:30 pm, Lunch on your own. The TremontPlaza has several restaurants and there are other eating establishments in the neighborhood.
  • 12:30 – 1:00 pm, Plaza B – Registration.
  • 12:45 – 1:00 pm,Plaza A - Childcare check-in.

We will be handing out index cards for you to write your questions for the speakers. Questions will be reviewed and answered during the question and answer period before our break and at the end of the afternoon sessions. There may be time for questions at the end of some presentations, but this is not guaranteed.

  • 1:00 – 1:15, Plaza B - Welcome – Connie Lee, President Angioma Alliance
  • 1:15 – 1:50 pm, Plaza B - Dr. Richard Clatterbuck, Director of Cerebrovascular Research and Assistant Professor of Neurosurgery and Neuroscience at JohnsHopkinsUniversity, will offer an overview of cavernous malformations and discuss their relationship to and co-occurrence with other vascular malformations (venous angiomas, etc). This presentation will provide an important foundation for the entire conference.
  • 1:50 – 2:30 pm, Plaza B – Dr. Eric Johnson, Prevention Genetics, will provide information on the genetics of CCM, genetic testing, and the importance of a patient registry. Prevention Genetics currently is the only facility approved for clinical genetic testing of the CCM1, CCM2, and soon the CCM3 gene. Because the prevalence of the familial form of CCM appears higher than previously thought, this presentation is important for both those who know they have the familial form of the gene and for those who believe their illness is confined to one member of their family.

Conference Program (Continued)

Friday, June 24

  • 2:30 – 2:45 pm, Plaza B - Question and Answer period with Drs. Clatterbuck and Johnson
  • 2:45 – 3:00 pm, Plaza B – Break
  • 3:00 – 3:30 pm, Plaza B –Alan Becke of MetLife MetDesk will discuss health/life/private disability/long term care insurance issues as well as estate planning for those who have children with CCM.
  • 3:30 – 4:00 pm, Plaza B – Vicky Deruggiero, Publics Affairs Specialist for the Social Security Administration, will discuss obtaining Social Security Disability benefits.
  • 4:00 – 4:30 pm, Plaza B – Dr. Mark Young, chairman of the department of Physical Medicine and Rehabilitation at the Maryland Rehabilitation Institute will speak about vocational rehabilitation and will also introduce strategies for pain management as this is his specialty.
  • 4:30 pm – 5:00 pm, Plaza B – Question and Answer session with Dr. Mark Young, Alan Becke, and Vicki Deruggiero.
  • 5:00 pm – 8:30 pm – Rest and dinner on your own. The InnerHarbor, with its large selection of restaurants and shops, is just 7 blocks away. There is also a restaurant in the hotel for those who prefer to stay local.
  • 8:30 – 10:00 pm, Hospitality Suite – Informal Reception. This will be a chance to put faces to computer screen names, to see old friends, and to meet new ones.

Saturday, June 25

  • 7:00 – 8:00 am,Plaza C –Breakfast
  • 7:30 – 8:00 am, Plaza C - Registration
  • 7:45 – 8:00 am, Plaza A - Childcare check in. Children age 2 and up will be visiting Port Discovery, Baltimore’s children’s museum. They will be shuttled to the museum at 9:45 am and will return atnoon. We are going to provide a brightly colored t-shirt and a nametag to each child so that we can spot them easily in this public space. Please indicate your child’s t-shirt size on our registration form. Additionally, please sign the attached parent permission form for your child.

We will be handing out index cards for you to write your questions for the speakers. Questions will be reviewed and answered during the question and answer period before lunch. There may be time for questions at the end of some presentations, but this is not guaranteed.

  • 8:00 – 8:15 am, Plaza B– Connie Lee, President, Angioma Alliance – Welcome.
  • 8:15 – 8:45 am, Plaza B – Dr. Daniele Rigamonti, Professor of Neurosurgery and Radiology at Johns Hopkins Medical School, Director of the Stereotactic Radiosurgery Center at Johns Hopkins Medical Center, and a Director of the Center for Inherited Neurovascular Diseases, will discuss surgery technology and options, and will present his view of radiosurgery for cavernous malformations.

Conference Program (Continued)

Saturday, June 25

  • 8:15 - 9:00 am, Plaza B - Dr. Issam Awad, Professor of Neurological Surgery at NorthwesternUniversity’s FeinbergMedicalSchool, researcher, and the chair of our Scientific Advisory Board will speak on Clinical Decision Making and Incorporating Research Advances in Patient Management. His presentation will include information about a “wait and see” approach to CCM management, pregnancy, spinal angiomas, and radiosurgery (Gamma Knife and similar techniques).
  • 9:45 am – 10:00 am, Break

10:00 – 10:45 am, Plaza B–Dr. Michel Berg is an associate professor of neurology and the Medical Director of the StrongEpilepsyCenter at the University of Rochester Medical Center. He will discuss medication issues relevant to those with cavernous malformations includingmanagement options for epilepsy, pain, attention disorders, sleep disorder, and fatigue.

  • 10:45 – 11:30 am, Plaza B – Dr. Leslie Morrison,pediatric neurologist and an assistant professor at the University of New Mexico Medical School,will speak on treatment options for children with cavernous malformations.
  • 11:30 – 12:00 pm, Plaza B – Question and Answer period.
  • 12:00 – 1:30 pm, Lunch on your own. Parents must take their children out of childcare during this time.
  • 1:15 – 1:30 pm,Plaza A – Parents may check children back into childcare.

1:30 – 2:15 pm, Plaza B – Experiences with CCM: Several active Angioma Alliance members whose lives have been affected by CCM as patients, parents, or spouses will share their experiences and answer questions.

  • 2:15 – 3:15 pm, Plaza B –Your experiences with CCM: This will be an opportunity for you to meet the other attendees at the conference. We will help you find others with situations similar to yours.
  • 2:45 – 3:00 pm, Plaza B – Break
  • 3:15 – 3:45 pm, Plaza B –Angioma Alliance: Announcements and questions for you

Sunday, June 26

Baltimore Aquarium Group Reservation if enough people are interested.

Hotel Reservations:

We have reserved a block of rooms at the Tremont Plaza Hotel in the heart of the InnerHarbor. The rooms feature fully equipped kitchens, separate seating areas, and high speed internet access. When you call to reserve your room, the reservations clerk will quote you a rate of $135 per night for a Studio Suite. However, Angioma Alliance will be paying $20 per night of each room reservation for Thursday, Friday, and Saturday night – this will be taken off of your bill when you check out. If you are interested in sharing a room, please contact us and we will try to help you find a room mate.

You can make a room reservation by calling the TremontPlaza directly at 1-800-873-6668; you must let them know that you are part of the Angioma Alliance conference. The $135 room rate is available two days prior to and two days after the event in case you’d like to come early or stay after. The TremontPlaza is guaranteeing that rooms will be available for us if you make your reservation by Thursday, May 26th. After this, they will release the rooms in our block, and you’ll be competing with the general public for a reservation. You will be charged for one night’s stay if you cancel your reservation with less than 48 hours notice. Parking is available at a self serve lot next to the hotel for $13/day or there is valet parking through the hotel for $25/day.

While we encourage everyone to stay at the TremontPlaza if they are able, less expensive accommodations (ranging from $79-$99) are available outside of town near the airport. These include a Red Roof Inn, an Extended Stay, a Microtel, and a Fairfield Inn. There is light rail service from the airport to the downtown area.

Childcare:

We will provide a limited number of toys for the childcare area during the presentations as well as a TV and VCR. We would appreciate any additional toys you could bring to make your children’s stay more pleasant. Please don’t bring any toys of value as they may become damaged.

If your child is not toilet-trained, please provide us with diapers.

We will check in children beginning at 12:45 pm Friday morning and 7:45 am Saturday morning. A snack will be provided in the childcare area. Please let us know if your child has any food allergies. Parents must take their children out of childcare for lunch on Saturday.

Children will be visiting Port Discovery, Baltimore’s children’s museum on Saturday morning. They will be shuttled to the museum at 9:45 am and will return at noon. We are going to provide a brightly colored t-shirt and a nametag for each child so that we can spot them easily in this public space. Please indicate your child’s t-shirt size on our registration form. Additionally, please sign the attached parent permission form for your child.

When you check in, you will be given a “claim ticket” for the safety of your child. Please present the ticket when you pick up your child. Please emphasize with your children, particularly with your older children, that they must remain with the childcare workers any time they are not with you during the conference. We will do everything we can to keep your children with us. We will contact the parents of any child who leaves unsupervised, and depending on the circumstances, they may not be allowed to return.

Childcare will be provided by the Elizabeth Cooney Agency, a professional healthcare and childcare agency. All providers have had extensive background checks covering the past 7 years, previous childcare experience, and some will be certified nursing assistants. Additionally, we will have Angioma Alliance representatives helping out during the field trip and supervising during the in-hotel hours. We will maintain a 5:1 child/worker ratio while at the hotel and a 3:1 ratio on the field trip.

Transportation/Directions:

If you are flying to the conference, the nearest airport is Baltimore-Washington International (BWI). There are several transportation options from the airport to the hotel:

a. Taxi – one-way taxi service to the hotel costs around $25.

b. Shuttle – the airport shuttle service is through SuperShuttle and costs $15 one way per person. Reservations are not needed from the airport to the hotel. However, you will need a reservation to be picked up at the hotel to return to the airport. To make a reservation, call 1-800-BLUE-VAN.

c. Light rail – there is a light rail stop approximately a half mile from the hotel (University Center/Baltimore St. stop at 12 S. Howard). One way fare is $1.60.

If you are driving:

From the North on 1-83:
* West on Baltimore Beltway (I-695) toward Towson
* Exit, 23 heading south on Jones Falls Expressway (I-83)
* Take St. Paul Street exit, one way, heading south
* Continue down St. Paul Street until it forks: take the right fork onto St. Paul Place
* Approximately four blocks down on the right will be THE TREMONT PLAZA
From the North or South on I-95:
* North from Washington or South through the Fort McHenry Tunnel
* Take the I-395 Exit, heading “Downtown”
* Coming off exit, stay in lane for “Inner Harbor”
* Bear right toward the Inner Harbor onto Conway Street
* At the second traffic light, turn left onto Charles Street
* You will go through approximately 5 traffic lights. Turn right onto Saratoga Street,
go down one block to St. Paul Place, turn right.
* THE TREMONT PLAZA is on the corner of Saratoga and St. Paul Place
From B.W.I. Airport:
* Exit airport I 95
* Continue on I-95 to Exit 4 “Baltimore”
* Take the I 395 Exit, heading “Downtown”
* Coming off exit, stay in lane for “Inner Harbor”
* Bear right toward the Inner Harbor onto Conway Street
* At the second traffic light, turn left onto Charles Street
* You will go through approximately five traffic lights. Turn right onto Saratoga Street
go down one block to St. Paul Place, turn right.
* THE TREMONTPLAZA is on the corner of Saratoga and St. Paul Place
From I-70:
* Take I-695 towards Glen Burnie. I-95 North to Baltimore and follow the above directions (from South
on I-95)

Conference Registration Form

Please complete pages 6-9 and mail to:

Angioma Alliance, 107 Quaker Meeting House Road, Williamsburg, VA23188

Have a question? Email or call 1-757-258-3355.

Registration Fees:

Adult: $65Children under 14 in childcare: $35 Reception and Breakfast Only: $25

Primary Contact:

Name: ______

Billing address: ______

City: ______State: _____Zip: ______

Phone number: ______E-mail: ______

Others who will be attending – items with * are for children in childcare only:

Name / M/F* / Age* / T-shirt size*

Registration Fee:

Number of: / Total
Adults / X $65
Children in childcare / X $35
Reception and Breakfast only – no presentations or childcare / X $25
Total fee:

Method of payment:

□ Check or money order enclosed. Please make checks payable to “Angioma Alliance”.

□ Credit Card:

Type of Card (please circle): VisaMastercard

Name on Card: ______

Card Number ______Exp. Date: ______

Have a question? Email or call 1-757-258-3355.

Please indicate if you will be staying at theTremontPlaza: Yes No

Estimated date and time of arrival Date: ______Time:______

Estimated date and time of departure Date: ______Time: ______

______

Below, please indicate the number of people from your family that plan to attend each event:

Friday Tour of Johns Hopkins lab (9:00 – 11:30 am) - ______

Friday afternoon presentations (1:00 pm – 4:00 pm) - ______

Friday evening reception (8:30 pm – 10:00 pm) - ______

Saturday breakfast (7:00-8:00 am) - ______

Saturday: Presentations (8:00 am – 4:00 pm) - ______

Sunday: Group trip to the National Aquarium (approximately 10:00 am – 1:00 pm) - ______

______

In order to direct the program toward particular interests, it is very helpful for us to know a little more about you. Please share with us who is/are the affected family member(s) and how are they affected (brainstem, spinal, multiple, temporal lobe, post-surgery, etc.). Also, please tell us if there is anything you specifically would like to get out of the conference.

______

______

______

______

We ask that you come with a sense of humor and a volunteer spirit. We could use help with the following tasks to make this conference a success. Pleaselet us knowif you could pitch in with:

Registeringfolkson Friday afternoon (12:30 – 1:00 pm)

Registering folkson Saturday morning(7:30-8:15 am)

Setting up the children's play area on Friday(12:30 pm – 1:00 pm)

Setting up the children’s play area on Saturday (7:30 – 8:00 am)

Attending the field trip to Port Discovery on Saturday (9:30 am – 12:00 pm)

Cleaning up the play area Friday (5:00 – 5:15 pm)

Cleaning up the play area Saturday (4:00 – 4:15 pm)

Collecting question index cards during presentations Friday

Volunteer needs (continued)

Collecting question index cards during presentations Saturday

Conference photographer – taking digital photographs at each event

Conference videographer – videotaping presentations Friday and Saturday

Conference A/V - Loading PowerPoint presentations, running LCD projector.

Releases

Mandatory:

General Liability Release

I release Angioma Alliance from liability for any injury or loss suffered by me or my family during the Angioma Alliance Family Conference held in Baltimore, Marylandon June 24, 25, and 26, 2005.

______

SignatureDate

______

Optional:

Attendee Directory

I give my permission for Angioma Alliance to include my name, city, state and email address in an attendee directory that will be handed out during the conference.

______

SignatureDate

Photography Release

I give permission for Angioma Alliance to take photographs of me and my family members listed below during the 2005 Family Conference. These photos may be used in an online newsletter or in fundraising materials.

Family members:

______

______

SignatureDate

Parent Permission Form for Field Trip to Port Discovery

Please read carefully

I/We, the parent/guardians of the children named below, understand the nature of the trip being planned to the children’s museumPort Discovery on June 25, 2005 from 9:45 am to 12:00noon. Transportation to and from the museum will be by chartered bus or van provided by the Tremont Plaza Hotel.

We are in accord with the purpose and procedures governing the trip. We hereby grant permission for our children to participate. We understand that adequate and appropriate supervision will be provided. We recognize, however, that unanticipated situations and problems can arise on any trip, conference-related or otherwise, that are not reasonably in the control of the supervising staff or volunteers. We further agree to release and hold harmless Angioma Alliance, their agents, and volunteers from any and all liability claims, suits, demands, judgments, costs, interest, and expense (including attorney’s fees) arising from such activities, including any accident or injury to the child and the costs of medical services.

In the event of any injury requiring medical attention, I hereby grant permission to the supervising childcare worker/volunteer to attend to my son/daughter. We understand that childcare workers are CPR certified and that a registered nurse will be present on the trip. If the injury warrants further medical attention, I expect every effort will be made to contact me to receive my specific authorization before action is taken. If efforts to contact me are unsuccessful, I grant permission for necessary medical treatment to be given. In addition, I give my permission to take my child to the physician, dentist or hospital if an accident or serious illness occurs on the trip and I can not be located.