The 20th Annual IPPF Patient Conference

September 15th- 17th, 2017

Overview

Conference Overview

The 2017 IPPF 20th Annual Patient Conference will take place in Newport Beach, California. It will be co-hosted by Dr. Sergei Grando and Dr. Joel Laudenbach.

 

Friday, September 15, 2017

The conference kicks off at 4:00 pm with 2 sessions designed to give new patients or those wishing to expand their knowledge an introduction to pemphigus and pemphigoid. The IPPF will host a “Welcome Reception” from 6:00 pm – 7:00 pm giving attendees an opportunity to network. After the reception, you are free to relax and enjoy the accommodations or explore the surrounding areas of Newport Beach.

Saturday, September 16, 2017

The morning session highlights lectures and a Physician Roundtable with a Q&A session of the panelists. After lunch we will discuss disease awareness and hold several “workshops” on treatment and care of patients with pemphigus and pemphigoid.  The workshop sessions are after lunch (2:30 pm – 5:00 pm). There are 3 blocks of workshops, each lasting 40 minutes. The intent of the Organizing Committee is to allow patients hands-on, one-on-one, or small-group sessions with a chance to ask questions. Speakers are requested to speak for as long as they choose, but to please allow time for a healthy discussion. Afterwards, there will be a one-hour cocktail hour and an awards dinner with entertainment.

Sunday, September 17, 2017

We continue with presentations on advocacy and research. The focus will be on how patients can be more engaged in research and the future advancement of therapies for pemphigus and pemphigoid. The conference concludes around 12:30 pm.

Conference Venue

Event Venue: Hyatt Regency, Newport Beach

1107 Jamboree Road
Newport Beach, California, USA, 92660

A Luxurious Resort-Like Newport Beach Hotel

Immerse yourself in the true resort experience, including rooms with stunning views, three swimming pools, and a unique restaurant. Enjoy easy access to Newport Dunes for paddle boarding, kayaking, and boat rentals, and minutes from Newport Beach’s 10 miles of scenic coastline, Balboa Island and world-class shopping.

The following amenities are included with your stay (info provided by the Hyatt Regency Newport Beach):

Beach Games – Shuffleboard / Table Tennis / Volleyball / Bicycle Rentals

Put a new spin on your game of table tennis, sharpen your shuffleboard skills, or get into the swing of the Southern California lifestyle with a heart-pumping game of volleyball. Play as you enjoy the lush tropical surroundings of our Newport Beach resort. Table tennis, shuffleboard and volleyball are complimentary, just ask our Fitness Concierge for the equipment and go play!

Cycling

With beautiful weather and California sunshine, Newport Beach is the perfect place to tour by bicycle. Enjoy a leisurely ride to picturesque Balboa Island, Newport Beach Back Bay Ecological Reserve, or into Newport Beach to enjoy local eateries, beaches and shopping. You can also experience the 10.5 mile Upper Newport Bay Trail located just out the back door of the hotel.

Golf

This par-3 Newport Beach golf course is perfect for improving your short game. Carved out of Newport’s Back Bay area, the executive course offers breathtaking scenery and 9 challenging holes. Start your Southern California golf vacation at Hyatt Regency Newport Beach, where green fees are included for up to 2 adults per room daily with your resort fee.

Free Shuttle to John Wayne Airport and Fashion Island / Balboa Island

During your stay at you’ll enjoy endless benefits. Take your time to indulge in exclusive benefits back at our hotel, including:

  • Premium wireless internet for up to 6 devices
  • 2 Bottles of Aquafina water daily
  • Hourly Shuttle service to SNA Airport
  • Mid-day shuttle services to Fashion Island Mall
  • Mid-day services to Balboa Island
  • Weekday shuttle service to Fashion Island Business district
  • Green Fees at Back Bay Golf Course
  • Bicycle rentals
  • Tea & Coffee in room
  • Tranquility Kits with ear plugs and sleep mask
  • Hotel activities: Volleyball, ping pong, shuffleboard, life size chess, horse shoes & water slide
  • 3 luxurious pools each with separate hot tub surrounded by inviting chaise lounges in our tropical resort setting
  • Fitness Center Access
  • Commemorative Kids cup (as applicable)
  • Fresh baked cookie upon arrival

MAKING RESERVATIONS
Please contact (888) 421-1442 for hotel availability.

BOOK NOW

About Newport Beach

DISCOVER NEWPORT BEACH (from Visit Newport Beach California)

Beyond the radiant sun, sand and surf, discover the sophisticated charm of Newport Beach, California. A place so intoxicating, one taste of the perfect life will keep you coming back for more.From sunset cruises to surf lessons, wine tastings to harbor-front promenades, we offer more things to do and more ways to spend your stay. We invite you to relax, unwind and enjoy picturesque views of California’s sunrise and sunsets – paradise is what we call it.

With the largest recreational harbor on the west coast, there are ten miles of extraordinary fishing, swimming, surfing, and aquatic sports activities.Ten distinct neighborhoods make up Newport Beach, each with its own unique personality, natural beauty and story to share.Looking for a quiet escape? You will find an intimate seaside oasis that will tempt you with its elegance, modern shopping and stunning residential landscape.

Agenda

20th Annual IPPF Patient Conference

Hosted by Dr. Sergei Grando & Dr. Joel Laudenbach

 

Friday, September 15, 2017

  • 4:00pm – 4:45pm – Introduction to Pemphigus – Donna Culton, UNC, Chapel Hill
  • 4:35pm – 5:25pm – Introduction to Pemphigoid – Razzaque Ahmed, Center for Blistering Diseases, Boston
  • 5:25pm – 6:00pm – IPPF Town Hall Discussion
  • 6:00pm – 7:00pm – Welcome Reception

Saturday, September 16, 2017

  • 8:00am – 9:00am – Registration and Networking Breakfast
  • 9:00am – 9:30am  – Welcome, Conference Overview, Foundation Update – Marc Yale, IPPF Executive Director
  • 9:30am – 9:50am  – One Patient’s Personal Story – Kenny Metcalf, Huntington Beach

Treatment & Care

  • 9:50am – 10:10am – Derm-Oral Combined Discussion – Joel Laudenbach, Western University, Pomona & Sergei Grando, UC Irvine
  • 10:10am – 10:30am – Topical Treatments Skin/Oral – Peter Marinkovich, Stanford University
  • 10:30am – 11:00am – Steroids/Immunosuppressants – Donna Culton, UNC Chapel Hill
  • 11:00am – 11:20amBREAK
  • 11:20am – 11:40am – Rituximab Therapy – Aimee Payne, UPenn
  • 11:40am – 12:00pm – Oral Care – Nancy Burkhart, Texas A&M University College of Dentistry
  • 12:00pm – 12:30pm – Physician Q&A Panel – All
  • 12:30pm – 2:00pm – LUNCH

Awareness Program

  • 2:00pm – 2:10pm – Awareness Program Updates & Video Presentation – Awareness Program Team
  • 2:10pm – 2:20pm – Changing the Way Rare Diseases are Taught – Joel Laudenbach, Western University
  • 2:20pm – 2:30pm – Awareness Ambassador Update – Kate Franz, Awareness Program Manager & Bryon Scott, Awareness Ambassador Coordinator

Workshops: Block # 1

2:30pm – 3:10pm – CHOOSE ONE:

  • Importance of Patients Participating in Clinical Trials – Animesh Sinha, University at Buffalo
  • Women’s Health with P/P – Vanessa Holland, UCLA
  • Future Targeted Therapies – Peter Marinkovich, Stanford University
  • P/P Below the Belt – Razzaque Ahmed, Center for Blistering Diseases, Boston

Workshops: Block # 2

3:15pm – 3:55pm – CHOOSE ONE:

  • IVIg Therapy – Sergei Grando, UC Irvine
  • Mental Health and Chronic Disease – Ivana Mitchell, Toronto
  • Insurance Issues – Sabrina Yeamons, Kroger Specialty Infusion
  • Oral Care *- Joel Laudenbach, Western University & Nancy Burkhart, Texas A&M University College of Dentistry

3:55pm – 4:15pm BREAK

Workshops: Block # 3

4:20pm – 5:00pm – CHOOSE ONE:

  • Caregiving – Jack Light, St. Jude Family Caregiver Resource Center
  • Mental Health and Chronic Disease – Ivana Mitchell, Toronto
  • Women’s Health with P/P – Vanessa Holland, UCLA
  • How to De-Stress – Mei Ling Moore, IPPF Peer Health Coach

5:05pm – 5:10pm – End of Day Announcements

Social Mixer – Don’t forget to get your event picture taken at our “Photo Booth”!

6:00pm – 7:00pm

Awards Dinner with Entertainment by “Kenny Metcalf as Elton” & Magician Terry Lunceford

7:00pm – 10:00pm


Sunday, September 17, 2017

  • 8:00am – 9:00am – Networking Breakfast
  • 9:00am – 9:10am  – Welcome Back Opening Remarks/Access to Treatment – Marc Yale, IPPF Executive Director

Advocacy

  • 9:10am – 9:25am – Self Advocacy/Becoming an Advocate – Becky Strong, IPPF Outreach Manager
  • 9:25am – 9:40am – Legislative Advocacy/Patient Story – Hannah Heinzig, IPPF Patient Educator
  • 9:40am – 10:00am – Improving the Patient Experience – Annette Czernik, Mt. Sinai Medical Center, NY & Esther Nelson, IPPF Patient Support Group Leader
  • 10:00am – 10:30am – Patient Q/A Session

10:30am – 10:45am – BREAK

Research

  • 10:45am – 11:00am – IPPF Research Program Update – Marc Yale, IPPF Executive Director
  • 11:00 am – 11:20am – Research Innovations in P/P – Sergei Grando, UC Irvine
  • 11:20am – 11:40am – Genetics – Animesh Sinha, University at Buffalo
  • 11:40am -12:00pm – Future Trials of targeted therapies in Pemphigus – Aimee Payne, UPenn
  • 12:00pm – 12:20pm – Future Trials of targeted therapies in Pemphigoid – Peter Marinkovich, Stanford University
  • 12:20pm – 12:40pm  – Clinical Trials and You – Annette Czernik, Mt. Sinai Medical Center, NY
  • 12:40pm – Closing remarks

Agenda is subject to change. Last updated on 9/1/17.

Travel & Hotel Information

Travel

John Wayne Airport, Orange County (SNA)

The Hyatt Regency Newport Beach is 5.6 miles from John Wayne Airport. The Hotel provides a complimentary shuttle which picks up hourly from 6:15am to 10:15pm.

By Car

The Hyatt Regency Newport Beach is located at 1107 Jamboree Road, Newport Beach, CA 92660  USA.
Self-parking is available at a discounted rate of only $10.00/day, including overnight.
Valet-parking is available at $20.00/day, and $36.00 overnight.

Hotel

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HYATT REGENCY NEWPORT BEACH

1107 Jamboree Road
Newport Beach, California, USA, 92660

The following amenities are included with your stay (info provided by the Hyatt Regency Newport Beach):

Beach Games – Shuffleboard / Table Tennis / Volleyball / Bicycle Rentals

Put a new spin on your game of table tennis, sharpen your shuffleboard skills, or get into the swing of the Southern California lifestyle with a heart-pumping game of volleyball. Play as you enjoy the lush tropical surroundings of our Newport Beach resort. Table tennis, shuffleboard and volleyball are complimentary, just ask our Fitness Concierge for the equipment and go play!

Cycling

With beautiful weather and California sunshine, Newport Beach is the perfect place to tour by bicycle. Enjoy a leisurely ride to picturesque Balboa Island, Newport Beach Back Bay Ecological Reserve, or into Newport Beach to enjoy local eateries, beaches and shopping. You can also experience the 10.5 mile Upper Newport Bay Trail located just out the back door of the hotel.

Golf

This par-3 Newport Beach golf course is perfect for improving your short game. Carved out of Newport’s Back Bay area, the executive course offers breathtaking scenery and 9 challenging holes. Start your Southern California golf vacation at Hyatt Regency Newport Beach, where green fees are included for up to 2 adults per room daily with your resort fee.

Free Shuttle to John Wayne Airport and Fashion Island / Balboa Island

During your stay at you’ll enjoy endless benefits. Take your time to indulge in exclusive benefits back at our hotel, including:

  • Premium wireless internet for up to 6 devices
  • 2 Bottles of Aquafina water daily
  • Hourly Shuttle service to SNA Airport
  • Mid-day shuttle services to Fashion Island Mall
  • Mid-day services to Balboa Island
  • Weekday shuttle service to Fashion Island Business district
  • Green Fees at Back Bay Golf Course
  • Bicycle rentals
  • Tea & Coffee in room
  • Tranquility Kits with ear plugs and sleep mask
  • Hotel activities: Volleyball, ping pong, shuffleboard, life size chess, horse shoes & water slide
  • 3 luxurious pools each with separate hot tub surrounded by inviting chaise lounges in our tropical resort setting
  • Fitness Center Access
  • Commemorative Kids cup (as applicable)
  • Fresh baked cookie upon arrival

MAKING RESERVATIONS
Please contact the hotel for availability: (888) 421-1442.

Awards Dinner & Entertainment

Awards Dinner

You’re invited to join the IPPF for its Annual Awards Dinner on Saturday night.

The IPPF hosts an Awards Dinner to honor those whose service to the pemphigus and pemphigoid community has made a significant impact over the previous year. It’s a great opportunity for all those affected by pemphigus and pemphigoid to come together in celebration of each other.

Kenny Metcalf as Elton

Kenny Metcalf as Elton John

For our 20th Annual Patient Conference, we are particularly excited to announce that world-renowned Elton John tribute artist and pemphigus patient Kenny Metcalf will be providing the entertainment for our Awards Dinner.

Here’s a bit about Kenny:

Original touring keyboardist for Stryper 1985-86 tours and current “frontman” for the tribute show “Kenny Metcalf as Elton”.

Kenny Metcalf as Elton & The Early Years Band.. more than just a tribute, “a show”, were hand picked to be featured on Mark Cuban and Ryan Seacrest’s network AXS TV show “THE WORLD’S GREATEST TRIBUTE BANDS.” Season 1 Episode 5 April 15, 2013.

They wowed a national audience ( 39 million ) during their live to air performance at The Roxy in Hollywood, California, with special guest appearance from Caleb Quaye. KMAE are known for performing a technically accurate Vegas style production, featuring the wildly popular music, costumes and antics of Elton John. They were invited back for a second LIVE AXSTV broadcast for a 90 minute special to 50 million viewers SEPT 30, 2014 on season 4, and Kenny was invited back to special guest appear in season 7 doing the Pinball Wizard with The Who Generation tribute. They are the only Elton John tribute to carry the backing/endorsement of Mark Cuban, Ryan Seacrest, AXS TV network, AEG, Katie Daryl ( host of The Worlds Greatest Tribute Bands ), and Elton’s original producer and original lead guitarist “Caleb Quaye”.

“Being on AXS TV’s (The Worlds Greatest Tribute Bands) made us a National touring act. It gave us the credibility of a national TV networks name behind us. That instantly separated us from every other EJ tribute out there.” – Kenny Metcalf 2015 –

“Elton” as portrayed by Kenny Metcalf, has the voice and appearance of Elton John when he was young. From rhinestones to sequins, every detail has been meticulously recreated. Iconic costumes including the infamous Los Angeles Dodgers uniform designed by Bob Mackie and glasses (created for Elton himself) by Ray Winston finish the illusion. Those fortunate enough to have seen Elton perform live experience a sense of “Deja Vu” while watching the captivating performance given by Kenny.

Audiences and critics alike leave with a sense that they “saw” Elton and his band. Caleb Quaye states that “witnessing this performance is like re-living infamous shows such as the Dodger Stadium show in 1975 where I (Caleb) performed with Elton. Being on stage with Kenny Metcalf was surreal!”

More at KennyMetcalfAsElton.com

Terry Lunceford: Straight from LA’s Magic Castle

Terry Lunceford

Terry Lunceford has enjoyed 40 years of success as a professional entertainer. He has headlined stages from Japan to Briton, from Caesars in Las Vegas to The Magic Castle in Hollywood.

Terry specializes in fast paced comedy where the audience members share in the magical experience. He is a master of sleight of hand, a skilled emcee, a television consultant, and an international lecturer. His clients include Disney, Cadillac, Hughes Aircraft, The SyFy Channel, and Nabisco just to name a few. He is a member of the Academy of Magical Arts, and former President of the International Brotherhood of Magicians in San Diego.

Always the inventor, Terry created a line of original magic products that continue to sell out. This includes the outrageous Viper Snake Basket, a magic shop best seller, and his amazing Floating Finger Ring (a personal favorite of Johnny Carson).

Thank you to our sponsors:

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