Healing Hearts 1st Annual Golf Tournament
Healing
Hearts would like to announce the 1st Annual
Golf Tournament to be held on Friday, August 24,
2007 at Oakmont Green Golf Club in Hampstead,
MD at 1:00pm. Healing Hearts was
established in 2005 in memory of Bonnie Milner. The Mission
of Healing Hearts is to: Increase awareness
of ARVD through fundraising activities and special events to help
prevent such tragedy from reaching other families; Raise funds
for the Johns Hopkins Heart Institute’s ARVD research program
to improve the prevention, detection, and treatment of the disease;
and Honor the memory of an incredible 26 year old devoted daughter
and beloved best friend. Please visit www.healingheartsmd.org for
more information about this organization. We would like to
thank Healing Hearts for their continued efforts to support ARVD
research at Johns Hopkins.
For more information about this event, download
the flyer (PDF).
2007 ARVD Family Seminar
The ARVD Program at Johns Hopkins invites you to attend the eighth annual ARVD Family Seminar on Saturday, May 5th at Johns Hopkins Hospital in Baltimore, Maryland. We are especially pleased to have Dr. William McKenna from London England joining us as our guest speaker.
> The tentative schedule and topics to be presented can be found by viewing the agenda.
The seminar will be held from 8 AM to about 4:30 PM at the Mountcastle Auditorium in the Preclinical Teaching Building located at 725 North Wolfe Street. Parking is available in the Washington Street Garage, located at Monument and Washington Streets. A lunch reception will be held immediately following the morning session. The afternoon session will consist of four small group discussions with the opportunity to attend two groups on the following tentative topics: “Genetics and Genetic Testing”, “ARVD Diagnosis and Management”, “Heart Failure Management and Transplant”, and “ARVD Fundraising”. The seminar and luncheon are free and open to anyone who is interested in ARVD.
A block of rooms has been reserved at the Holiday Inn, Baltimore-Inner Harbor located at 301 W. Lombard Street for the nights of the May 4th and May 5th at a rate of $139/night for single and double rooms. There is an additional fee for each additional person. Please make your reservations by April 8, 2007 by calling 1-800-HOLIDAY or 410-685-3500 and ask for the ARVD PATIENT FAMILY SEMINAR rate or give the code “ARV”. You may also make your reservations online by clicking on this link.
Toregister for the seminar, please complete and return the registration form to Jackie Kaczmarczyk via fax (410-614-8899) or email jkaczmar@jhmi.edu Please complete one registration form per person. You will receive a confirmation packet upon receipt of your registration form. Please call Jackie at 410-502-0080 with any questions. Please let us know if you plan to attend as early as possible.
We hope you can join us!
Sincerely,
The Johns Hopkins ARVD Program
2006 ARVD Family Seminar
The ARVD Program at Johns Hopkins invites you to attend the seventh annual ARVD Family Seminar on Saturday, April 29th at Johns Hopkins Hospital in Baltimore, Maryland. We are especially pleased to have two guest speakers joining us this year: Frank Marcus, MD will give an update on the status of the NIH Multidisciplinary Study of Right Ventricular Dysplasia and Samuel Sears, PhD will present on the Psychosocial Challenges for ICD Patients. View the 2006 Agenda.
The seminar will be held from 8 AM to about 1 PM at the Mountcastle Auditorium in the Preclinical Teaching Building located at 725 North Wolfe Street. Parking is available in the Washington Street Garage, located at Monument and Washington Streets. A lunch reception will be held immediately following the seminar. The seminar and luncheon are free and open to anyone who is interested in ARVD.
A block of rooms has been reserved at the Holiday Inn, Baltimore-Inner Harbor located at 301 W. Lombard Street for the nights of the April 28th and April 29th at a rate of $139/night. Please make your reservations by calling 1-800-HOLIDAY or 410-685-3500 and ask for the ARVD PATIENT FAMILY SEMINAR rate or give the code “ARV”. You may also make your reservations online.
Register now! Complete the registration form and return it to Jackie Kaczmarczyk by fax: 410-614-8899 or email jkaczmar@jhmi.edu. Please complete one registration form per person. You will receive a confirmation packet upon receipt of your registration form. Please call Jackie at 410-502-0080 with any questions. Let us know if you plan to attend as early as possible.
New this year, we will be having an informal Meet & Greet at the hotel on Friday evening between 7:30pm and 10pm. Come meet other families and enjoy some coffee and snacks. Please let us know if you will be attending as we need an accurate head-count.
Finally, we will have opportunities available for individuals with ARVD and their family members to participate in some research projects after the lunch reception. Dr. Sears will also be available in the afternoon for a discussion group. We have not finalized these plans yet, but will post further information as soon as possible.
We hope you can join us!
Sincerely,
The Johns Hopkins ARVD Program
2005 ARVD Family Seminar
The conference was a huge success. Stay tuned for news about next year's seminar.
We were pleased to have two guest speakers joining us this year: Guy Fontaine, MD shared his experience studying ARVD in France and Jeff Towbin, MD provided an update on the genetics of ARVD.
2004 ARVD Family Seminar
The ARVD Program at Johns Hopkins invites you to attend the fifth annual ARVD Family Seminar on Saturday, May 15th at Johns Hopkins Hospital in Baltimore, Maryland. We are especially pleased to have Domenico Corrado, MD, PhD from Padua, Italy as our guest speaker this year. He will speak about his experience studying ARVD in the Italian population. Additional topics to be presented will be announced at a later date.
The seminar will be from 9am to 1pm at the Mountcastle Auditorium in the Preclinical Teaching Building located at 725 North Wolfe Street. Registration will begin at 8:30am. Parking is available in the Washington Street Garage, located at Monument and Washington Streets or at the Broadway garage on Jefferson Street. A lunch reception will be held immediately following the seminar. The seminar and luncheon are free and open to anyone who is interested in ARVD. We have reserved a block of rooms for the nights of the May 14th and 15th at the Best Western Hotel and Conference Center (www.bestwestern.com) located at 5625 O’Donnell Street in Baltimore, Maryland 21224 (about 5 miles from the hospital and 8 miles from the Inner Harbor) at a discounted rate of $95 per night.
To reserve a room, please contact the hotel directly at 410-633-9500 or 1-(800)-WESTERN and mention the “ARVD Seminar at Johns Hopkins”. The discounted rooms will be available on a first come-first serve basis through April 14th. (Please make your travel and hotel reservations early as the Preakness Stakes, a celebration of horse racing in Baltimore is also being held on May 15th so the area hotels have increased their rates.)
To register for the seminar, please contact Jackie Kaczmarczyk at jkaczmar@jhmi.edu or 410-502-0080. We’d be more than happy to answer any questions you have. Please let us know if you plan to attend as early as possible.
Finally, we will have opportunities available for individuals with ARVD and their family members to participate in some research projects after the lunch reception. We have not finalized these plans yet, but will post further information as soon as possible.
We hope you can join us!
Sincerely,
~ The Johns Hopkins
ARVD Program
Contact 2003 Silent Photo Auction
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Event Details |
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The ARVD Program at Johns Hopkins Medicine is honored to be the beneficiary of the Contact 2003 Silent Auction Event in New York City on December 4, 2003, 6:00 pm to 9:00pm at the Capitol at Chelsea 776 6th Avenue. Many of our closest friends and volunteers have worked tirelessly to make this event happen for a second year running.
We invite you to participate in two ways. First, please consider attending the event on December 4, 2003 in New York City. Details will be forthcoming. Second, our volunteers are requesting names, stories and photos for the Memory Wall at the event.
If you would like to have a friend or family member included on the Memory Wall, please contact Nann Patridge with questions. Physical photos in color or black and white are acceptable, as well as electronic documents sent by email in a jpeg format (500 pixels). We would like to include the individual's date of birth and date of death along with a photo, poem, letter, or anything else you would like to include in memory of your loved one. The deadline for submitting information for the Memory Wall is November 7. For your convenience, Nann's contact information is included below.
Nann
Patridge
NLP Productions Worldwide
241 West 19th Street Apt #1R
New York, NY 10011
Phone: 212-604-0478
Fax: 212-604-0498
Mobile: 917-292-9394
nann@nlpproductions.com
nannlp@msn.com
We hope that you will be able to participate in this exciting event to raise money and awareness for ARVD.
2003
ARVD Family Seminar
The ARVD Program at Johns Hopkins invites you to attend the fourth annual
ARVD Family Seminar on Saturday, April 26th at Johns Hopkins Hospital
in Baltimore, Maryland. We are especially pleased to have Kathy Hodgkinson,
MS as our guest speaker this year. She will speak about her experience
studying ARVD in the Newfoundland population. Additional topics to be
presented include: pediatric ARVD and screening children; the ARVD population
collected at Johns Hopkins; the role of MRI, signal average ECG, and CT
in diagnosing ARVD; and updates on ARVD genetics and the Multidisciplinary
Study of Right Ventricular Dysplasia.
The seminar will be from 9 AM to 1 PM. (We're still deciding on the specific
room - it depends on how many of you will be able to join us!) Registration
will begin at 8:30. Parking is available in the Washington Street Garage,
located at Monument and Washington Streets or at the Broadway garage on
Jefferson Street. A lunch reception will be held immediately following
the seminar. The seminar and luncheon are free and open to anyone who
is interested in ARVD. We have reserved a block of rooms for the nights
of the April 25th and 26th at the Radisson Plaza Lord Baltimore hotel
in downtown Baltimore at a discounted rate (includes transportation to
and from the conference). To reserve a room, please contact the hotel
directly at 410-539-8400 or 1-(800)-333-3333 and mention the "ARVD
Seminar". The discounted rooms will be available on a first come-first
serve basis through March 28th.
To register for the seminar, please email Cindy James at cjames@mail.jhmi.edu
or call 443-287-5985. I'd be more than happy to answer any questions you
have. I'd greatly appreciate you letting me know if you plan to attend
as early as possible.
Finally, we hope to have opportunities available for individuals with
ARVD and their family members to participate in some research projects
while they are in town for the seminar. We have not finalized these plans
yet, but will post further information as soon as possible.
We hope you can join us!
Sincerely,
Cindy and Crystal
Changes in the ARVD Program
After working with the ARVD Program for over 2 years, Julie Rutberg is leaving, due to an out of state move. In her place, we welcome Crystal Tichnell. Crystal is a genetic counselor who graduated from the University of Maryland's Genetic Counseling Program. Crystal will meet with patients, answer questions via phone and email, and manage this website. Crystal can be reached at 410-502-7161 or email ctichnell@jhmi.edu
2002 ARVD Patient Seminar
The 2002 patient seminar was held on April 13th in Baltimore and was attended by over 85 people. Our invited speaker was Dr. Frank Marcus from the University of Arizona, who has been studying ARVD for over 20 years. Dr. Marcus reviewed the progress made in diagnosing and treating ARVD, and where the research is heading. Other speakers included Dr. Hugh Calkins who heads the Johns Hopkins ARVD Program and two young researchers working with Dr. Calkins, Drs. Tandri and Nasir. A synopsis of the talks will be posted on this site shortly, and we thank all of those who helped make the conference such a success.
Finally, we have a new research study involving radiology, cardiology and laboratory tests for people diagnosed with ARVD. Please see the description of this study on the research page of this site. Research studies will be conducted on April 13th.
The US ARVD grant has been funded, and we would like to congratulate Dr. Frank Marcus for all his years of hard work to make this possible. All of the details of how people will join the research have not yet been finalized. We do know that the research will not begin until March 2002. Organizational meetings are scheduled for the researchers in early January, after which time, more information will be forth coming. As Dr. Marcus suggested previously, collecting your medical records now, will save time and allow you to be enrolled as soon as the study begins. Medical records can be sent to either Kathy Gear, RN at University of Arizona or Julie Rutberg, MS at Johns Hopkins Hospital.
CHANGES TO THE WEB SITE
The www.arvd.com Web site is undergoing changes! We've added two new sections entitled "At Hopkins" and "Research" that will help you find new information. In the coming weeks we will be adding another area where we will review the recent medical literature in order to keep you up to date. We anticipate updating the Web site approximately every 6 weeks, so check back frequently!
ARVD Patient Seminar
The ARVD Program at Johns Hopkins invites you to attend the Third ARVD Patient Seminar on Saturday, April 13th at Johns Hopkins Hospital in Baltimore, Maryland. We are especially pleased to have Dr. Frank Marcus as our guest speaker this year. As you may know, in 1982, Dr. Marcus along with Dr. Guy Fontaine, wrote the first paper describing the clinical findings of ARVD. Dr. Marcus will speak about his experience over the last 20 years in studying ARVD, which has most recently resulted in a NIH funded study. He will discuss the Multidisciplinary Study for Right Ventricular Dysplasia that starts in March 2002, as well as plans for future research projects. Also at the seminar, Dr. Hugh Calkins will provide an overview of ARVD, including the difficulties in diagnosing ARVD and the progress made during the past year using magnetic resonance imaging. The newest members of the ARVD Program at Johns Hopkins, Dr. Khurram Nasir and Dr. Hari Tandri, will discuss their research projects and we will review the genetic research methods and the current knowledge about the genes that cause ARVD. Finally, we will leave plenty of time for everyone to ask questions and to meet one another.
The seminar will be from 9 AM to 1 PM in the Pre-Clinical Teaching Building, located on the corner of Wolfe and Monument Streets. Parking is available in the Washington Street Garage, located at Monument and Washington Streets. A lunch reception will be held immediately following the seminar. The seminar is free and open to anyone who is interested in ARVD. We have reserved a block of rooms at the Wyndham Hotel in downtown Baltimore at a discounted rate that includes breakfast and transportation to Johns Hopkins. To reserve a room, please contact Linda at Johns Hopkins Travel at 1-800-225-2201. Linda can also help with other travel arrangements to Baltimore.
To register for the seminar, please email Julie Rutberg, MS at jrutberg@jhmi.edu. If you have already responded to an email invitation to the seminar, you do not need to contact Julie again.
A message from Dr. Frank Marcus:
On October 1, 2000, a grant application was submitted to the National Institutes of Health (NIH) to study arrhythmogenic right ventricular cardiomyopathy/dysplasia (ARVC/D). Dr. Frank Marcus at the University of Arizona is the principle investigator and Dr. Hugh Calkins at Johns Hopkins is the co-principle investigator. A total of 10 different University Medical Centers will be enrolling patients in the registry. Two additional centers have applied for funding as part of this grant for the genetic studies and the data coordination. Dr. Jeff Towbin at Baylor University in Texas will provide the genetic studies and Drs. Zareba and Moss of the University of Rochester in New York will organize the data collection and analysis.
Why a registry for the study of ARVC/D? Since this is an uncommon condition, it is necessary that several medical centers systematically accumulate information on patients in order to have enough data. For example, one research question is whether it is possible to predict the risk of developing a serious heart rhythm abnormality on the basis of the electrocardiogram. It will take a relatively large number of patients followed for several years to answer this and similar questions. As noted above, 10 medical centers in the United States and Canada will be searching for families who are affected with ARVC/D to enroll them in this registry as well as to send blood samples to Dr. Towbin for genetic investigations.
The grant will be reviewed by a committee at the NIH and, hopefully will be approved by the first week in March 2001. If so, funding will start on July 1, 2001. If you have ARVC/D or if someone in you family has ARVC/D, do not wait for the approval process to be finished. The registry will be off to a running start if we hear from you and we begin to accumulate information about you or your family. That way we will be ready to go by July 2001!
If you wish to become part of the ARVC/D registry, please contact Kathy Gear at the University of Arizona, 1-800-483-2662 or Julie Rutberg at Johns Hopkins Medical Center, 410-502-7161."
Dr. Calkins is delighted to be the co-principle investigator on the ARVD grant and looks forward to working with Dr. Marcus on this important initiative in the coming years. In addition to this grant, we will be pursuing other, smaller research projects at Johns Hopkins in the near future.
ARVD Seminar A Great Success
On November 10, 2000, sixty people gathered in an auditorium at Johns Hopkins Hospital to learn the latest medical updates on Arrhythmogenic Right Ventricular Dysplasia. After a welcome from both Dr. Kenneth Baughman, the head of the Cardiology Division and Julie Rutberg, MS, the clinical coordinator, the first speaker was Dr. Hugh Calkins. Dr. Calkins reviewed the progress made at Johns Hopkins over the last three years. The message was clear that the pace of scientific discovery and research has grown exponentially both in the United States and abroad. To represent the international collaboration within the scientific community, Dr. Thomas Wichter from Muenster, Germany was an invited speaker. Dr. Wichter illustrated his talk on the diagnosis and treatment of ARVD with images taken during the invasive cardiac tests which are often required to make the diagnosis. Dr. Hal Dietz then spoke on the process of genetic research and how it will impact the treatment of this condition. Finally, a panel of doctors took questions from the audience and from patients who had submitted them via email.
The four-hour seminar ended with the announcement that a new patient brochure is now available. The fourteen page brochure is intended to educate patients, their families and friends about the diagnosis, treatment and management of ARVD. The brochure is available free of charge and can be requested through the contact page at this site. A second brochure aimed at educating physicians is in the planning stages and will be completed by next summer.
The Medical Video Department at Johns Hopkins filmed the entire seminar and copies of the tapes will be available in December. The final cost of the two-tape video set has not yet been determined, but is likely to be under $10. Watch your email boxes and this space for further announcements about the videotapes.
Thanks to everyone for a successful seminar and here's hoping that next year it will be even bigger and better!
Julie Rutberg, MS has been hired to be the research and clinical coordinator for the ARVD project.
Julie Rutberg, MS has been hired to be the research and clinical coordinator for the ARVD project. Julie is a genetic counselor who has worked for the last six years at Johns Hopkins in Pediatric and Adult Genetics. In the role of clinical coordinator, Julie will organize patient appointments for cardiac testing and evaluation by the appropriate cardiologist. She will meet patients and obtain a detailed family history and counsel patients about the risk of ARVD in other relatives. In the research role, Julie will manage the database at Johns Hopkins and work on efforts to establish the International registry. She will also help to identify families with ARVD that can participate in genetic studies. As research protocols are developed to answer specific questions related to ARVD, Julie will also enroll patients and track this data as well.