April - PRP Alliance

On the Road…
The Journey from Onset through Remission
April ✱ 2015
Denver to San Francisco: What a difference a year makes
On the Road…
The Journey from Onset
through Remission
!
Last year I attended the American Academy of Dermatology’s
72nd Annual Meeting in Denver. I rubbed elbows with over 8,000
dermatologists and learned enough to set some personal goals for
the AAD’s 73rd Annual Meeting planned for San Francisco.
On Saturday, March 7, 2015, I left Texas in a rental car and began a
4,868-mile, 23-day adventure. I was literally On the Road… to the
Mayo Clinic in Scottsdale, AZ and on to UC San Diego, UC Irvine,
UCLA, USC and a gaggle of dermatology clinics in Southern
California. Then it was on to San Francisco.
A road trip can easily go horribly wrong or
April 2015 ✱ Volume 2, Number 6
Copyright © 2014-2015 by PRP Alliance
!
Published monthly by
the PRP Alliance
1500 Commerce Drive
Plano, TX 75093-2640
Phone: 214-205-0574
EDITORIAL
Publisher & Editor: Bill McCue
Associate Editor: Nicola Galt
Senior Proofreader: Pat Batty
Voluntear Prufreedur: Candace Cooper
SUPPORT GROUP LIAISON
Facebook: Tierney Ratti, Administrator
PRPSG: Still seeking a volunteer
wonderfully right. Thankfully, all my ducks seemed
to be lined up.
There were seven PRP Meet & Greets My road trip provided an opportunity to meet
Michael Funk, Will Sivilli and his fiancé Pam, Pat Nathan, Nancy
Wilson-Ramón (her husband is the PRPer), Nicola Galt, Marianne
Bowles, Gena Hubach and her mother Gwen, Mitch Miller and
Mary Holman, and Claire Gearing and her daughter, Kitty.
The three Exhibit Halls made it easy to access information
Thanks to the Coalition of Skin Diseases, Nicola and I had access
to the Exhibit Halls from 7:30 AM to 5:00 PM, Saturday through
Monday. All the companies and organizations we needed to see
were available to chat.
Some BIG announcements to be made
There are several important announcements to be made this
month involving:
✴
last month and the resulting brouhaha?)
SUBMISSION OF CONTENT
Letters, articles, updates, events, images and
inquiries regarding On the Road… should be sent via email to
Bill McCue at ([email protected])
or via the PRPA website (prpAlliance.com)
OPT-OUT POLICY
Anyone who is currently on the mailing list to
receive On the Road…The Journey from
Onset through Remission may request
to be removed from the mailing list
at anytime via email. CLICK Opt-Out.
Healthline.com (remember their “mildly itchy” faux pas early
✴
THE DERMATOLOGIST, a magazine currently reaching 14,798
dermatologists, physician assistants and dermatology nurses
✴
Plans for the PRP Alliance to become a non-profit
organization with 501(c)(3) tax-exempt status, a prerequisition for membership in the Coalition of Skin Diseases.
And there’s even more good news to share. Read on….
Bill McCue
PRP Patient Advocate
Table of Contents
On the Road … The Journey from Onset through Remission: April, 2015
!
Road trip spawns PRP Meet & Greets
Eight PRPers, two spouses, a fiancee, a
mother and a daughter share their stories
16
The grand harvest at the Mayo Clinics The door has been opened to document the
diagnosis and treatment of PRP since 1950
17
PRP and the Efficacy of Cosentyx
Novartis offers to contact Glen Misek’s
dermatologist to monitor his use of the drug
5-6
PRP to be featured in THE DERMATOLOGIST
The PRP Alliance has been asked to write
750 -word, 2-page article for July issue
18
Woman’s Dermatologic Society
The PRP community needs to nurture a
relationship with this dynamic group
7-9
Coalition of Skin Diseases
It has taken a year, but the PRP Alliance has
found friends to help us on our path forward
19
SDPA eager to learn about PRP
The Society of Dermatology Physician
Assistants offers a page in upcoming issue
10
A Front burner project: 501(c)(3) The PRP Alliance is fully committed to
becoming a tax-exempt, non profit by 11/06
20
Dermatology Nurses Association
In year’s past, articles about PRP were
published. We need to reboot that support
11
PRPA & Canadian Skin Patient Alliance
Great opportunity to write about the PRPers
in Nova Scotia and Dr. Robert Tremaine
21
We need to know more about biopsies
Dermatopathology services may help the
PRP community with insights and stats
12
PRPA forges ahead with IDPOC 2015
PRP Alliance committed to participation in
the upcoming international conference
23
PRP research presented Jean-Luc award
PRP Alliance recognizes Dr. Jouni Uitto, et.al.
at gathering of TJU dermatology alumni
13
Dermatology World
This AAD publication should be on the
reading list of every PRP Patient Advocate
24
PRPA thanks Beiersdorf’s brand manager
It was time for the PRP community to thank
makers of Eucerin and Aquaphor in person
14
Practical Dermatology
Another publication worthy of an article
about PRP written by a dermatologist
24
AAD’s Dialogues in Dermatology
PRP Alliance interviewed for inclusion in the
innovative continuing education program
15
Dermatology Times
We need to help a dermatologist submit an
article about PRP for publication
25
Path Forward: The fork in the road
The future of the PRP Alliance rests in the
hands of an involved PRP community
1-3
Faux pas creates incredible opportunity
PRP community given opportunity to set
record straight for current and future PRPers
4
Table of
Contents
On the Road … The Journey from Onset through Remission: March 1, 2015
PRP Meet & Greets from Texas to California
1
Editor’s Note
There’s something about Laura Numeroff’s
book, If You Give a Mouse a Cookie,
that strikes close to home. While the
mouse goes from a cookie to a glass of
milk to a straw and more distractions, I went from a four-day gathering of
dermatologists in San Francisco to a
24-day, 4,868-mile adventure.
Only one PRP Meet & Greet was
initially planned and Mary Holman
and Mitch Miller offered to coordinate the
many PRPers I expected. But alas, no PRPers
03/07/2015 —— Michael Funk, Abilene,
— neither active nor in remission — signed up.
Texas; Onset: 04/2013 @ 63; Dx: 09/2013;
Initially my plan was to fly to San Francisco
and stay with my son, a graduate student at
Stanford University. As I planned for every
contingency, I discovered that I needed more
Type 1; Current Status: nearing remission;
Dermatologist: Dr. Joe Cannon. My second Meet &
Greet with Mike, a fellow veteran.
than a suitcase and a carry-on. I needed to
rent a car because my 2004 PRP Cruiser
might die going to California or coming back.
The mantra:
“Each one
different.
Each one
special.”
made every
mile I drove
a gift, and
every day an
opportunity.
The rental car meant, however, I could see
Michael Funk and Will Sivilli, have a Meet &
Greet in San Diego and maybe even Gena
Hubach in Merced. I was hopeful.
I also used my ground transportation as an
opportunity to visit the dermatology
departments at the Mayo Clinic (Scottsdale,
AZ) and teaching hospitals in Southern
California (UC San Diego, UC Irvine, UCLA,
USC and two VA medical centers.
The eight Meet & Greets reminded me that
the PRP Alliance is an aggregation of people
with a rare skin disease where we desperately
03/09/2015 —— Will Sivilli, Tucson, Arizona;
Onset: 04/2008 @ 56; Dx: 05/2008; Type
2; Current Status: chronic; Current dermatologist: Dr. Paul English. Will’s best treatment for PRP is
need each other. The mantra: “Each one
every time he visits his condo in Mexico and bathes in
different. Each one special.” made every mile
the Sea of Cortez.
I drove a gift, and every day an opportunity.
PRP Meet & Greets from Texas to California
2
03/17/2015 —— Pat Nathan, San Diego,
healthcare analytics. The discussion over lunch
California; Onset: 04/2013 @ 70; Dx: 12/2013;
centered around the reliability of the oft-quoted PRP
Type 1; Current Status: Remission. Had forgotten that
prevalence rate of one in 400,000.
Pat is a dermatopathologist who studied with Dr.
Nicola Galt, Central Otago, New Zealand; Onset:
Alan Mentor, a Dallas-based PRP guru in his own
09/2004 @ 31; Dx: 09/2013; Type 2; Current
right. We discussed biopsies as a diagnostic tool. She
status: chronic. On this, her first trip to America,
put the efficacy of biopsies on my front burner.
Nicola has included the American Academy of
Nancy Wilson-Ramón was representing her
Dermatology 73rd Annual Meeting on her itinerary
PRPer husband, Jose Ramón, San Diego, California;
that included Disneyland, Universal Studios and
Onset: 01/2015 @ 77; Dx: 02/2015; Type 1;
Fisherman’s Wharf. She even “worked” the Coalition
Current status: acute; Current dermatologist: Dr. R.
of Skin Diseases booth in the Exhibit Hall for two
Simon Jacob. Nancy’s professional life has been in
hours on Saturday and Sunday (03/21-22)
03/17/2015 —— Marianne Boyles, San Diego,
California; Onset: 08/2013 @ 60; Dx:
09/2013; Type 1; Current Status: on the road to
remission. Current dermatologist: Dr. Tina Chen, San
Diego. Marianne is employed by a large law firm and
could only manage a 30-minute break. Nicola and I
met her in the lobby of her office building. She is as
gracious in person as she is as a frequent participant
in the “Land of Chat.”
PRP Meet & Greets from Texas to California
3
03/17/2015 —— Gena Hubach, Merced,
California; Onset: 07/2012 @ 43; Dx:
04/2013; Type 1; Current Status: on the
road to remission. Current dermatologist: Dr.
Justin Ko at Stanford University. Nicola and I
met Gena and her mother, Gwen, at Pea
Soup Andersen’s in Santa Nella on Interstate
5 as we drove from San Diego to San
Francisco. We could have talked for hours
about Gena’s version of PRP and the
challenging road she has traveled.
03/22/2015 —— Mary Holman and
PRPer Mitch Miller, Novato, California;
Onset: 06/2011 @ 59; Dx: 09/2011; Type
1; Current Status: in remission “with
remnants.”. Current dermatologist: PRP guru
Dr. John Koo at UC San Francisco. Nicola
and I met Mary and Mitch for dinner and
again, the following day, for lunch. Mitch and
Mary took Nicola on a six-hour tour with the
couple acting as tour guides. In the space of
24 hours these “new friends” became our
“old friends.”
03/29/2015 —— Claire Gearing,
Scottsdale, Arizona; Onset: 04/2014 @
40; Dx: 05/2014; Type 1; Current Status:
nearing remission; Dermatologist: Dr. Jerold
Powers. The unusual Meet & Greet venue
was the cafe at the IKEA in Tempe, Arizona.
Also had the opportunity to meet Claire’s
daughter, Kitty, who has supported her Mum
on her journey with PRP.
4
Healthline asks PRP Community to write the article
The first order of business for the PRP Alliance
was to officially register for the American
Later in that day Bill received an email from
Rachael with the following message:
Academy of Dermatology 73rd Annual
“It was nice meeting you and Nicola today.
Meeting. It was Friday morning, March 21.
I just wanted to follow up with you about
Next on the agenda was to fulfill a promise
changing the language in our PRP article
made to the PRP community in the March
to more accurately reflect what it’s like to
issue of On the Road…. Specifically, Bill and
live with the condition. Please talk to the
Nicola were going to make the 10-minute walk
PRP community and email me with the
from Moscone Center to 660 Third Street, the
language you prefer to be used, and we’ll
location of the Healthline Networks corporate
update the article.” headquarters.
Read about Healthline’s “mildly itch” faux
pas in the March issue of On the Road…
(pages 7-9)
An opportunity and a responsibility
Mission accomplished! But be careful what you
wish for. We have the opportunity to rewrite
the entire article about PRP — not just edit the
“mildly itchy.”
The elevator doors opened to rows of desks
Rachael wants the article on PRP to reflect
and computers. No one looked up except the
the reality of the disease as experienced by
person at the desk closest to the elevator. Bill
PRPers. Healthline.com averages the #3
told her the story about the Healthline.com
“result” when PRPers search for pityriasis rubra
“mildly itchy” faux pas.
pilaris on Google, Yahoo and Bing. This is an
She listened intently, excused herself and
opportunity to provide a response that future
waded into sea of workstations. Within three
PRPers will find helpful, hopeful and accurate.
minutes Rachael Maier, managing editor of
Bottom line: We need to get it right!
Healthline.com, understood the faux pas.
PRPers who want to help in the development of this article should CLICK HERE.
5
Bill —
I am writing to invite the
PRP Alliance to write a
Guest Commentary for The Dermatologist’s
“Voices” column for the
July 2015 issue.
— Lisa
by Bill McCue, PRP Patient Advocate
!
In late March, 2014, over 8,000 dermatologists
There was no short cut to be taken. When I
assembled in Denver, Colorado along with
handed magazine editors my PRP Alliance
over 400 exhibitors. Included among a gaggle
business card I knew that our website, 17
of publications was THE DERMATOLOGIST,
issues of On the Road… (360-plus pages) and
published by HMP Communications, a leader
the ever-growing PRP SURVIVAL GUIDE (650-plus
in healthcare communications and education.
pages) would help the PRP Alliance rise above
HMP publishes some of the nation's most well-
the noise level.
respected medical journals across a wide
spectrum of medical specialties.
Back then, the first 10-page issue of my
newsletter (April, 2014) of the On the Road…
hadn’t even been written and the PRP SURVIVAL
GUIDE had absolutely no content. All I had was
a PRP sweatshirt extolling the rarity of PRP.
Pitching a story to the media
Public relations is both an art and a science. I
On the last day of the AAD Annual Meeting,
I received an email from Lisa Samalonis,
managing editor of THE DERMATOLOGIST:
“I am writing to invite the PRP Alliance to
write a Guest Commentary for The
Dermatologist’s “Voices” column for the July
2015 issue. The 750-word article is an
opportunity for the PRP Alliance to speak
directly to our professional audience —
knew that the newsletter would be critical to
made up of dermatologists, derm physician
establishing future credibility with the media.
assistants and derm nurse practitioners.”
PRP to be featured in July 2015 issue of The Dermatologist
At one time or another we all have been challenged in body, mind and
spirit. The success of the PRP Alliance will be based on the relationships we
build whether we journey over rocks or through golden fields.
Lisa explained that the article will run in print,
I returned from the Denver AAD gathering
online at www.-the-dermatologist.com and
and was declared in remission by Dr. Arturo
also in their digital tablet edition. Dominguez on April 8, 2014. For the past year
The topic is ours to choose. We can focus on
our mission as it pertains to dermatologists.
✴
The timely diagnosis of PRP and a more
effective use of biopsies as a diagnostic
tool
✴
A broader palette of treatment options
✴
Increased PRP-related research
✴
Referral of patients with PRP by the
dermatologist to the PRP Alliance, PRP
Facebook Support Group and PRP
(email) Support Group.
Lisa added: “The purpose of the ‘Voices’
section is to connect the community and help
foster more industry-wide communication. We
are featuring guest commentaries from various
associations and foundations over the course
of 2015-16. Samples of Voices guest
commentaries are available online.
Epilogue
We have all been in pain from PRP. It is a
common denominator we share. We have
been challenged in body, mind and spirit.
the San Francisco AAD Annual Meeting was
going to be the lynchpin in my planning to
enlighten dermatologists.
The ongoing success of the PRP Alliance will
be based on the mutually beneficial
relationships we build whether we journey
over rocks or through golden fields.
While reviewing THE DERMATOLOGIST
Editorial Board, a name of a friend of the PRP
community appeared. It
was none other than
Jouni Uitto, MD, PhD and chair of the Sidney
Kimmel Medical College’s
Department of
Dermatology and
Cutaneous Biology at
Thomas Jefferson
University. For a rare disease, our paths keep
crossing. It may be a sign.
PRPers who want to help in the development
of this article should CLICK HERE.
6
7
A new journey begins.
by Bill McCue, PRP Patient Advocate
New challenges await.
✴
Shadi wasted no time and introduced
My attendance at the AAD’s 72nd Annual
me to Jean Pickford, executive director
Meeting in Denver in 2014 was based on a
of the Foundation for Ichthyosis and
need to understand the dermatology market.
Related Skin Types (FIRST) and CSD
What I really needed was to better understand
treasurer, who invited me to consider
the world of skin disease advocacy.
joining the Coalition of Skin Diseases
(CSD).
Four people are responsible for where the
PRP Alliance is today — committed to a new
journey. Here’s the timeline:
✴
Dr. Arturo Dominguez is my
dermatologist at University of Texas
Southwestern in Dallas. Under his
watchful eyes, my 20 months as an
“active” PRPer ended on April 8, 2014.
✴
Arturo introduced me to a colleague and
dynamic skin disease advocate, Dr.
Shadi Karoush, a dermatologist with
Massachusetts General Hospital.
Dr. Arturo Dominguez
Dr. Shadi Kourosh
✴
Jean referred me to Kristi Schmidt-Burr,
president of the CSD and the BCC
Nevus Syndrome Life Support Network.
For the past year Kristi has extolled the
benefits of CSD membership.
The new journey” upon which the PRP
Alliance has embarked is “Organization
Membership” in the Coalition of Skin Diseases
by PRP Awareness Day. But first, the PRP
Alliance must become a bona fide non-profit
organization with 501(c)(3) tax-exempt status.
Jean Pickford
Kristi Schmidt-Burr
8
It will cost $200 to join the CSD. What are the benefits?
There are three pre-requisites for Organization
One of the most understated benefits of CSD
Membership in the Coalition for Skin Diseases:
membership is the access to the knowledge
The PRP Alliance must be incorporated
and experience of the 15 current member
as a non-profit
organizations. These are the folks who toil in
The PRP Alliance must be tax-exempt
under section 501(c)(3) of the Internal
Revenue Code
The PRP Alliance must directly impact
patients (adults, adolescents, children)
and families affected with skin diseases,
while aligning with the mission of the
CSD. We already qualify here.
The stated benefits of membership include:
✴
Topical conference calls on
organizational development
✴
CSD website addresses sent to all
the vineyard of skin patient advocacy. They
have been where the PRP Alliance is today.
They are kindred spirits who share common
goals and frustrations. Some are established
non-profit organizations serving millions of
families feeling the burden of a skin disease;
others serve small populations suffering from
rare diseases like ours.
Organization membership provides an
opportunity to build a special bond with
people just like us, including:
✴
National Alopecia Areata Foundation
✴
BCC Nevus Syndrome Life Support
members of the American Academy of
Network
Dermatology. Includes name, photo,
✴
mission and direct link to organization
Cicatricial Alopecia Research Foundation
✴
websites.
Cutaneous Lymphoma Foundation
✴
National Foundation for Ectodermal
✴
CSD iPhone app
✴
Joint display opportunity at the
✴
National Eczema Association
American Academy of Dermatology
✴
Foundation for Ichthyosis & Related Skin
Dysplasia
Types
Annual meeting
✴
Inclusion in the CSD Development Day
and Skin Disease Research Lobby Day
(all expenses paid for 2 individuals from
each member organization)
✴
Membership on the CSD listserv (an
active email group in which member
organizations share resources)
✴
Name and contact information listing in
the yearly CSD brochure
✴
Pride in knowing that you belong to a
unique group of dedicated organizations
who advocate on behalf of patients with
skin diseases.
✴
Nevus Outreach
✴ Pachyonychia Congenita Project
✴ Int'l Pemphigus & Pemphigoid
Foundation
✴ National Psoriasis Foundation
✴ Sturge-Weber Foundation
✴ Int'l Topical Steroid Awareness Network
✴ Vitiligo Support International
✴ Xeroderma Pigmentosum Family Support
Group
CSD membership provides the PRP Alliance
with access to people, resources and
experience critical for our path forward.
9
When two rare skin
disease advocates
“work the CSD booth”
for two hours…they
share more than stories.
Marc Yale, Senior Peer Health Coach for the
Pemphigus and pemphigoid are rare,
International Pemphigus & Pemphigoid
autoimmune blistering skin diseases that affect
Foundation (IPPF) and I were both scheduled
a very small percentage of the population.
for “booth duty” in the Exhibit Hall at
Blistering may be accompanied by severe
Moscone Center on Sunday morning. For two
pain, itching, burning, and stinging. Sound
hours we fielded questions about the Coalition
familiar? If extensive, the blistering can lead to
of Skin Diseases from passersby — mostly
life-threatening fluid loss, infection, and
dermatologists. We also had an opportunity to
disfigurement.
chat about our respective rare diseases.
Mark learned about PRP and the PRP
Pemphigus and pemphigoid are chronic
illnesses that, with rare exception, do not
Alliance while I learned that the IPPF provides
improve without active treatment. Treatment
direct access to innovative and effective
approaches include a control phase and then a
support that
maintenance phase, with the possibility of
✴
promotes the very best health care,
✴
improves quality of life,
✴
stimulates community resources,
✴
advocates for favorable government
policies,
✴
accelerates the pace of scientific
discovery and
✴
offers access to the world’s best source
of information on pemphigus and
pemphigoid.
complete remission or disease relapse (flare).
Pemphigus and pemphigoid patients are
normal, everyday people and can live normal,
everyday lives. It takes time, treatment, and
perseverance, but it is possible.
Mark and I both attended the CSD luncheon
a day earlier where the incoming AAD
president, Dr. Mark Liebwohl, announced an
“open-door policy” for patient advocates like
the CSD. It was great news to hear.
The value of CSD membership also includes
such serendipitous face to face, email or
phone exchanges with fellow CSD members.
Whether face to face, email or phone, such
contact is a great return on a $200 investment.
10
What will it take to incorporate
as a non-profit organization with
501(c)(3) tax-exempt status?
A quick recap: Why should the PRP Alliance
While LegalZoom indicates that it takes nine to
become a non-profit corporation with 501(c)(3)
12 months for 501(c)(3) approval, CSD veterans
tax-exempt status? There are seven reasons:
estimate that it is more like five months. The
1. 501(c)(3) tax-exempt status is a pre-
PRP Awareness Day goal is doable if we
requisite to become a member
complete the state filing before May 1.
organization of the Coalition of Skin
Here’s what happens.
Diseases (CSD)
✴
As a first step in forming the non-profit
corporation, LegalZoom will confirm that
2. 501(c)(3) tax-exempt status is a prerequisite to join the National
the business name, PRP Alliance, Inc., is
Organization of Rare Disorders (NORD)
available.
3. The PRP Alliance will enjoy enhanced
✴
Incorporation and file them with the
credibility within the nonprofit
Secretary of State of Texas and complete
community
the remaining corporate formation
4. The PRP Alliance will be better
positioned to pursue private and public
documents.
✴
grants
application and when it has been
approved by the State of Texas.
deductible for donors — an important
✴
501(c)(3) application to the I.R.S.
be exempt from federal income tax
postage rates on corporate mailings
How long will it take?
We are looking at a two-step process. Rather
What’s the cost?
✴
LegalZoom Fee $359
✴
State Filing Fee: $25
✴
501(c)(3) Application Fees: $495
✴
Obtaining the Employer Identification
than wait four to six weeks, the PRP Alliance
has elected to significantly expedite the filing
of state documents (seven to ten business
days) by paying an additional fee.
Upon approval of the state application,
LegalZoom will complete and submit the
6. Income earned by the PRP Alliance will
7. The PRP Alliance will qualify for lower
LegalZoom will provide notification by
email when it submits the PRP Alliance
5. Donations to the PRP Alliance will be tax
and practical incentive
LegalZoom will prepare Articles of
Number: $49
✴
Total Cost: $928
The path forward?
Order a 501(c)(3) mug today. CLICK HERE 11
The Coalition of Skin
Disease Luncheon opens
door for PRP article about
Nova Scotia in CSPA’s
Canadian Skin Magazine
by Bill McCue, PRP Patient Advocate
When Nicola Galt and I picked up our name
tags for the CDS Luncheon on Saturday (March
21), we received different table assignments.
Wisely, luncheon organizers wanted
guests to mingle and share. The mingle
imperative continued when I
discovered that the position of each
guest at the table had been preassigned as well.
Seated to my left was Kathryn
Andrews-Clay, the recently hired
Kathryn Andrews-Clay
Executive Director
executive director of the Canadian Skin
Patient Alliance (CSPA). It turned out
the be yet another case of serendipity.
With a population of nearly 35 million, I
knew that Canada should have around 87
“active” PRPers. Unfortunately, the PRP
Alliance database has only identified 10. We
really need a partner in Canada to help
identify “active” PRPers and educate
dermatologists. I was sitting next to her.
By the end of the luncheon I was convinced
that the Canadian Skin Patient Alliance was a
kindred spirit with much more clout than the
PRP Alliance.
The CSPA is a national not-for-profit
organization that provides education,
information, a supportive online community,
and opportunities to create and join local
support groups for all Canadian skin patients.
Dermatological services research report
The CSPA also serves as a national umbrella
organization for 14 disease-specific patient
organizations. Each year, the CSPA publishes
SKIN DEEP, a research report comparing access
to dermatological
services and drugs in
each province and
territory.
Quarterly magazine
The CSPA publishes
CANADIAN SKIN. I took
the opportunity to pitch a
story about five PRPers in
Nova Scotia to Kathryn.
What makes the Nova Scotia story even more
compelling is that three of the five PRPers
have the same PRP-savvy dermatologist, Dr.
Robert Tremaine. Such an article would help
put PRP on the map of Canada and perhaps
help identify more “active” PRPers.
The Spring issue has just been published so
I hope an article about PRP might coincide
with PRP Awareness Day in the fall.
12
by Bill McCue, PRP Patient Advocate
IDPOC is a PRP Alliance priority
As reported in the March issue of On the
After spending a few days with the members
Road…, the International Dermatology Patient
Organization Conference (IDPOC) is the firstever gathering of “patient leaders” dedicated
to the operation of patient support
organizations in the area of dermatology.
The PRP Alliance has accepted an invitation
of the Coalition of Skin Diseases in San
Francisco, I realized that participation in the
IDPOC is a proper use of what are always
limited resources, e.g., time and money.
PRP Alliance priorities are crystal clear.
1. File Articles of Incorporation of the
from IDPOC 2015 organizers, paid the $120
Secretary of State in Texas to make the
fee and registered for the event to be held in
PRP Alliance a bona fide non-profit
Vancouver, British Columbia on June 11-13,
organization
2015.
2. Apply to the Internal Revenue Service for
I look forward to a plethora of IDPOC
workshops and forums in the following areas:
501(c)(3) tax-exempt status
3. Upon approval of the 501(c)(3)
✴
Successful fundraising
application, join the Coalition of Skin
✴
Patient outreach
Diseases, the National Organization of
✴
Building volunteer organizations
Rare Disorders and the Canadian Skin
✴
Building and managing social media
Patient Alliance.
campaigns
✴
Improving care and treatment
✴
Providing more effective and timely
diagnoses
✴
Networking with other patient support
organizations
✴
Sharing our programs — giving and
getting ideas.
But the most exciting opportunity afforded
by IDPOC 2015 is to participate in the creation
of an international association of patient-led
dermatology organizations.
4. Continue the publishing the monthly
newsletter On the Road…
5. Continue to add content to the PRP SURVIVAL GUIDE
6. Continue adding “core data” to the
PRPA database
7. Continue adding PRP-savvy
dermatologists to the online Registry
The immediate challenge will be to make the
IDPOC 2015 a reality for the PRP Alliance. We
have done it before, we will do it again.
13
The American Academy of
Dermatology has a plethora of
publications, Dermatology World
should be on your reading list
by Bill McCue, PRP Patient Advocate
DERMATOLOGY WORLD offers PRP Patient
Advocates an opportunity to better
understand the challenges and “best
practices” facing over 12,000 dermatologists
in the U.S.
In addition to a monthly archive of every
issue of DERMATOLOGY WORLD going back to
January 2011, there are separate archives for
the following regular sections.
✴
From the Editor
✴
Legally Speaking
✴
Facts at Your Fingertips
✴
From the President
Copies of DERMATOLOGY WORLD (March
Question: How many patients do you see
each week and how do you determine the
ideal number of patient visits per week?
How does Dr. Zalla’s response compare with
your dermatologist?
“We have a low-volume practice. I might
see 25 patients in a day, because we choose
to spend more time with each patient. We
like to take the time to thoroughly explain
what’s happening with their skin, what to do
and not do about it, and why. Patients who
have a thorough understanding of what’s
going on… are more likely to be cleared in
one visit. I do not believe in having patients
come back in just to tell me they’re well. I’d
2015) were placed strategically around
rather give that time to somebody else with
Moscone Center. Here are three articles worth
more serious problems.”
a quick read:
✴
Whose data is it, anyway? by attorneys
Alice Gosfield and Daniel Shay
James Zallas, MD
Two questions prompted responses worthy of
note.
✴
Dermatology in Canada by Victoria
Houghton, assistant managing editor
✴
Blueprints for Health Poilicy by Victoria
Houghton, assistant managing editor
Sometimes you will read an article and
compare your own dermatologist’s approach
Question: How do you encourage
communication with your patients?
Again, how does Dr. Zalla’s response compare
with your dermatologist?
“I always end my office visit session with ‘Do
you have any questions?’ to give patients an
opportunity to recall something else they
may have forgotten to mention. Most
patients appreciate this. We also provide
disease-related brochures to patients.
to patient care.
For obvious reasons, DERMATOLOGY WORLD is
In the March issue, DERMATOLOGY WORLD
interviewed Dr. James Zalla (Florence, KY).
now on the PRP Alliance reading list to learn
about “best practices.” How about yours?
14
Practical Dermatology (Booth
#1142) was a BIG surprise with
unexpected opportunities for the
PRP Alliance to raise awareness of
PRP among dermatologists.
by Bill McCue, PRP Patient Advocate
PRACTICAL DERMATOLOGY is a monthly
magazine that provides coverage of medical
care, cosmetic advancements and practice
management for clinicians in the field. Lots of
straight-forward, how-to advice to enhance
quality of care and improve the daily operation
Surprise #3
And then there is DermTube and the
DermTube Journal Club. The latter is a series
of 37 six-minute videos hosted by Dr. Joshua
Zeichner, Director of Cosmetic and Clinical
Research in the Dermatology Department at
Mount Sinai Hospital in New York.
of dermatology practices.
Surprise #1
The PRACTICAL DERMATOLOGY editorial board
includes Alan Mentor, MD (Baylor University
Medical Center, Dallas), a recognized expert in
the treatment of psoriasis and a bona fide PRPsavvy dermatologist located with 20 minutes
of the PRP Alliance office.
Dr. Zeichner interviewed PRP-savvy Clay
Surprise #2
Cockerell, MD about the latest developments
Published bimonthly, NEWDERMMD offers tips
in dermatopathology. Dr. Cockerell discusses
for residents and new physicians on a range of
how new tests may change the way
topics related to professional and practice
dermatopathologists and dermatologists
development and new therapies. And there
interact. It was Dr. Cockerell who confirmed
she was — Brooke Eastham, MD recognized
my own diagnosis of PRP in November, 2012.
for her work as a second year resident at
The Takeaway
Harvard Dermatology. Watch video about PRP.
PRACTICAL DERMATOLOGY, NEWDERMMD and
DERMTUBE are not going to publish a patientwritten article about PRP. They would,
however, consider something presented by the
likes of Alan Mentor, MD; Brooke Eastham;
Clay Cockerell or a growing list of PRP-savvy
dermatologists we might be able to recruit.
Food for thought.
15
How can the PRP Alliance be a
catalyst for PRP-related news in
the November 2015 issue of
Dermatology Times?
by Bill McCue, PRP Patient Advocate
✴
most loyal patients because of the way
DERMATOLOGY TIMES is the only clinical news
resource serving a readership of more than
14,000 dermatologists and other professionals
they are treated while disgruntled
✴
to help practitioners put into perspective, a
broad spectrum of issues affecting their
business. Readers (dermatologists) receive
See a disgruntled patient as soon as
possible. Absence does not make the
focused on skin care. Through unbiased
reporting, the monthly newsmagazine strives
Some disgruntled patients become the
heart grow fonder.
✴
Have the patient come in before hours,
or during lunch, so they're not sitting in
the waiting room getting more angry.
practical information to better understand
Getting an article into Dermatology Times
issues related to business growth.
As PRPers we universally lament the ignorance
DERMATOLOGY TIMES is not going to publish
patient-written articles about PRP. There are,
however, ways to place PRP into bona fide
news via PRP-savvy dermatologists.
Disgruntled patients require attention
An article by staff correspondent John Jesitus
in the February issue of DERMATOLOGY TIMES
illustrates the opportunity and challenge of
getting a PRP-related article into that
publication. Some of the conclusions Jesitus
presents — none of which involved any
specific reference to PRP — provide insight
into best practices:
✴
Avoiding patients who report
complications is perhaps the quickest
path to litigation ✴
Ensure that the staff knows which
patients require urgent handling.
and bewilderment of dermatologists who
prematurely diagnose psoriasis and load us up
with prednisone. Weeks, months and even
years may pass before an accurate diagnosis is
rendered. An enlightened dermatologist can
be the focus of a news story.
The PRP Community should collect both the
horror stories of diagnostic incompetence as
well examples of dermatologists who “nailed
the diagnosis straightaway.” We need to
identify PRP-savvy dermatologists who select
and explain treatment options that work. If
such treatments fail to provide relief, who are
the dermatologists that are relentless in their
quest for alternative therapies that do work.
We can get PRP into DERMATOLOGY TIMES,
but it will take some extra effort. Are we up to
the challenge? Time will tell.
16
Like many great
ideas, the plan
had merit, but it
turned out to be
impractical. or
perhaps wishful
thinking? Okay…it
was unrealistic.
by Bill McCue, PRP Patient Advocate
The plan was to visit the dermatology
departments of major teaching hospitals in
California and open important “channels of
enlightenment.” My visits would precede the
American Academy of Dermatology 73rd
Annual Meeting in San Francisco (March 20-23).
✴
University of California, San Diego
✴
University of California, Irvine
✴
University of California, Los Angeles
✴
University of California, San Diego
✴
University if Southern California
✴
University of California, San Francisco
✴
Stanford University
I learned (the hard way)
that the only way to
penetrate the dermatology
department of a teaching
hospital is to have someone
on the inside who unlocks
the front door.
Similarly, visits to private
clinics resulted in the
exchange of business cards, delivery of a few
PRP “Enlightenment” mugs, and little more.
The same can be said for Veteran
Administration medical centers San Diego, Los
Angeles, Palo Alto and San Francisco. The
“Rules of Engagement” (military jargon) require
that a Public Affairs “honcho” (more military
jargon) pre-approve the sharing of statistics and
pre-approve access to dermatologists on staff.
While I had hoped that teaching hospitals
and the Veterans Administration would be a
source of data on PRPers, this is not the case.
There is a light at the end of the tunnel, and
it is being held by Lynn Closway who works in
the Office of Public Affairs at the Mayo Clinic in
Scottsdale, Arizona. She
took the time to listen to my
story and promised to open
some doors in Rochester,
Minnesota where the Mayo
Clinic data and the data
keepers reside.
Time will tell.
17
Novartis to coordinate with Glen Misek’s PRP-savvy
dermatologist to monitor the efficacy of Consentyx
by Bill McCue, PRP Patient Advocate
!
Last year I visited all the pharmaceutical
Since then, Glen has been prescribed
companies exhibiting at the American
Cosentyx. He also confirmed that his
Academy of Dermatology 72nd Annual
dermatologist is prepared to write a research
Meeting in Denver, Colorado. I quickly learned
paper if Glen’s results are positive. That’s why
that while dermatologists could speak directly
he was genetically tested for CARD 14.
with sales and marketing representatives, I
could not. I was routinely shuffled off to an outof-the-way kiosk with a placard displaying
some variation of “Medical Information.”
The sooner I told a salesperson I was a PRP
Patient Advocate for the PRP Alliance, the
sooner I would be ushered to the right person.
They needed to know about Glen Misek
On December 17, 2012, a U.S. federal
trademark registration was filed for COSENTYX
by Novartis AG.
On January 10, 2015, Glen Misek (Illinois)
posted the following message to the PRP
Facebook Support Group: “Soon a new
biologic will be approved in EU and US —
Cosentyx from Novartis. Very stunning trial
results in psoriasis and other autoimmune
diseases. Inhibits a protein il17a which is also
linked to PRP. You may want to ask your derm
about it and potential to help.”
Novartis Announces Cosentyx Approval
Pharmaceutical companies have staggering
advertising budgets. With over 10,000
dermatologists and other healthcare
professionals, Novartis left no stone unturned.
In addition to a significant corporate display
in the Exhibit Hall and banners on the side of
buildings, every San Francisco cable car carried
“Cosentyx Approved” posters on all four sides.
Novartis is serious about promoting Cosentyx.
Perhaps Glen’s “experiment” will encourage
researcher’s to focus on PRP. Time will tell.
18
The Women’s Dermatologic
Society offers three opportunities
to advance the PRPA goals
by Bill McCue, PRP Patient Advocate
✴
Women are more susceptible to some
diseases, at the whim of the rise and fall
The Women's Dermatologic Society (WDS)
was established in 1973 to help women in
of hormones (depending on age and
dermatology realize and fulfill their greatest
disease state)
potential. Since then, the WDS has grown to
✴
Woman view the physical consequences
become an international organization, with
of aging with a bit more trepidation than
well over 1,000 members from around the
most men.
world.
✴
Women tend to use products (hair and
WSD membership is comprised of both
nails), undergo procedures, and take
women and men, represents a diverse cross-
medications that men usually do not.
section of professionals in private practice,
Opportunity #1
academia, managed care and industry.
WDS President Kathleen Hectorne is one of
While attending the American Academy of
27 doctors at Mayo Clinic Hospital in
Dermatology 73rd Annual Meeting I learned
Rochester, Minnesota. After 25 years as a
about the new International Journal of
dermatologist is Dr. Hectorne PRP-savvy? Let’s
Women’s Dermatology. IJWD editor’s explain
find out.
the unique needs of women in the field of
Opportunity #2
dermatology.
The IJWD promises to deal with all issues in
IJWD editors have called for WDS members to
submit articles. We need to identify PRP-savvy
dermatology but also specifically deal with
dermatologists who are also members of the
dermatologic issues that affect women and
WDS and help them tell the stories of women
their children.
and children with PRP — the stories shared
✴ Alopecia to a female has different
psychosocial implications than to
day.
most men
Opportunity #3
✴ Breast diseases and lesions may have
a greater impact both medically and
socially
✴ Women are generally the ones in
Kathleen Hectorne, MD
with the PRP Facebook Support Group every
charge of the children (although with
more help from our spouses and
partners than ever before).
The WDS will have their Annual Meeting
Luncheon in March, 2016 during the next ADD
annual meeting. Perhaps the PRP community
could formally recognize the diagnosis skills
PRP-savvy WDS dermatologists.
Path Forward: The first step is to WDS
members who are PRP-savvy. CLICK HERE to
help.
19
What a difference a year makes. One
year ago the role of the physician
assistant did not seem to be a high
priority for the PRP Alliance. It’s about
time we reassess that opinion.
by Bill McCue, PRP Patient Advocate
!
I’ll be the first to admit that the first time my
It didn’t take long for Jennifer to set me
dermatologist passed me on to a Physician
straight about the important role that a
Assistant I thought my quality of care was
dermatology physician assistant plays as part
gong to suffer. While it didn’t, the passalong
of the dermatologist/PA team.
to a Physician Assistant irked me.
I took the opportunity to share
my initial impression of her
Over the past few years I have
heard about Physician Assistants
profession and my willingness to
who recognized PRP before the
share my “enlightenment” with the
dermatologist. I saw these more as
PRP community in On the Road
“urban legend” and my distain for
and in the PRP SURVIVAL GUIDE.
Physician Assistants continued.
That’s when the discussion turned
On March 17, just a few day
to the JOURNAL OF DERMATOLOGY
FOR
before the start of the AAD annual
Meeting I participated in a PRP
Meet & Greet in San Diego with
Jennifer Winter, PA-C
PRPers Nicola Galt, Pat Nathan, and Nancy
PHYSICIAN ASSISTANTS (JDPA).
Published quarterly, the JDPA
seeks to improve dermatological
patient care by publishing the most
Winter-Ramon. Nancy’s husband, Jose Ramon
innovative, timely, practice-proven educational
had been diagnosed by Kellye Vogel, a
material available.
Physician Assistant with MedDerm Associates.
Opportunity to reach out to SDPA members
The supervising dermatologist, Dr. R. Simon
The PRP Alliance has been invited to write an
Jacob concurred.
When I stopped by booth #5736 in the
article for the JDPA. Specifically, the article
would appear in a regular department called:
Exhibit Hall, I was greeted by Jennifer Winter,
From the Patient’s Perspective. Physician
the Immediate Past President of of the Society
assistants may be the very allies we need to
of Dermatology Physician Assistants (SDPA)
enlighten dermatologists about PRP.
and a PA-C with Dermatology and Allergy
Specialists of Olympia (Washington).
!
20
The Dermatology Nurses’ Association
almost slipped past the PRP Alliance,
but they are still on our radar. We
were on their radar in 2005 and we
need to make our presence known.
by Bill McCue, PRP Patient Advocate
The Dermatology Nurses’ Association is a
professional nursing organization comprised of
a diverse group of individuals committed to
quality care through sharing knowledge and
expertise. The core purpose of the DNA is to
promote excellence in dermatologic care.
Since its inception at an informal meeting in
1978, the DNA has grown to over 3,000
In late 2005 the DNA introduced a new
column: “Patients’ Perspectives: Living
With…," The column was designed to help
dermatology nurses better understand the
physical and emotional challenges faced by
patients with chronic dermatologic diseases or
members with 19 local chapters.
conditions. In the column, patients answer
The DNA has been proactive in educating
specific questions about diagnosis, treatment,
members. The first journal, DERMATOLOGY
education, support and life changes. In this
NURSING, was published in 1989 and evolved
column, patients described their life-changing
into DNA FOCUS, a highly informative quarterly
experiences after being diagnosed with
publication. DNA FOCUS has continued to
pityriasis rubra pilaris (PRP).
evolve in response to the members’ needs.
!
In October and December 2005, the stories
of two PRPers, Ralph Gilmore (Texas) and
Lorna Roberts (Oregon) helped launch this
new editorial feature.
The DNA and pityriasis rubra pilaris
In 2009, DNA launched a new official journal,
the JOURNAL OF THE DERMATOLOGY NURSES'
ASSOCIATION (JDNA).
Path Forward: Relationships with
Associations, Societies and Organizations must
be nurtured. The PRP community has hundreds
!
of stories to tell dermatologists, dermatology
physician assistants and dermatology nurses.
21
Are there ways to increase
the efficacy of biopsies in
biopsies in the diagnosis of
PRP? It’s time to find out!
by Bill McCue, PRP Patient Advocate
consultative review of difficult or unusual
The field of dermatopathology was well
cases. represented in the Exhibit Hall during the
ProPath Dermatopathology is an integral
American Academy of Dermatology 73rd
part of our 100 percent physician-owned
Annual Meeting at the Moscone Center in San
pathology practice. We are pleased to
Francisco.
provide exceptional, reliable and convenient
Assuming that a patient has PRP, but the
dermatologist has yet to make the diagnosis
— or even suspects PRP:
✴
diagnostic services, and are committed to
continuing our leadership role in raising the
bar for quality dermatopathology services.
How should a biopsy be performed to
increase the likelihood of a timely PRP
diagnosis?
✴
What should the dermatopathologist be
looking for?
There are five companies from whom
information will be sought to write a definitive
article about the challenges of diagnosing PRP
in a timely manner. The goal is to publish PRP:
The Elusive Diagnosis to coincide with PRP
Awareness Day (November 6, 2015).
StrataDx
What they say about themselves:
For nearly three decades, StrataDx™ has
been a leading anatomic pathology
laboratory dedicated to providing physicians,
patients and hospitals with unrivaled
diagnostic services. We are committed to
providing the most reliable, timely diagnosis
of cancer and other diseases by combining
an academic approach with outstanding
customer service.
ProPath Dermatopathology
What they say about themselves:
ProPath Dermatopathology is a premier team
of dermatopathologists providing diagnostic
expertise to physicians nationwide. We offer
a broad range of services, including
We offer a full range of pathology services
to meet our clients’ needs – whether it’s the
latest in molecular pathology, technical slide
preparation-only, or special stains.
22
VisualDx has the best dermatologic image
collection in the world. Use the images in
your practice to help recognize unusual
variants or to teach and reassure your
patients.
Aurora Diagnostics
What they say about themselves:
Aurora Diagnostics is a premier healthcare
provider providing unsurpassed diagnostic
and information services to physicians,
Cockerell Dermatopathology
hospital systems, and researchers. It is our
What they say about themselves:
belief that the practice of medicine and the
delivery of health care are both personal and
best delivered locally. Our physician team of
over 150 licensed physicians, supported by
over 1,200 medical and laboratory
personnel, reside in the medical
communities we serve. Their focus is to
transform the healthcare services we
provided to physicians - one patient at a
time.
Cockerell Dermatopathology, a full-service
dermatopathology practice, serves
dermatologic clinicians throughout the
United States and abroad. With an accessible
team of dermatopathologists, our primary
focus is to deliver definitive diagnoses while
providing unparalleled support services.
Founded by Dr. Clay J. Cockerell, former
president of the American Academy of
Dermatology and internationally recognized
dermatologist and dermatopathologist,
Cockerell Dermatopathology offers
diagnostic excellence and unparalleled
service in the evaluation of dermatologic
VisualDx
What they say about themselves:
The VisualDx diagnostic clinical decision
support system includes the world’s best
medical image collection, combined with the
ability to search by morphologies, symptoms,
medications, skin type, age, and body
location
VisualDx is licensed by almost half of all
medical schools and used by more than 30
dermatology residency programs. Find out
why so many dermatology residencies and
disorders ranging from the routine to the
most difficult cases. With an accessible team of boardcertified dermatopathologists, Cockerell
Dermatopathology’s core focus is quickly
delivering definitive diagnoses all while
providing unparalleled support services.
NOTE: It was Cockerell Dermatology who
reviewed my fifth biopsy that supported my
dermatologist’s “hunch” that I was a cardcarrying, Type 1, Classic Adult Onsets PRPer.
Path Forward: The PRP Alliance will form a
medical student educators are using VisualDx
PRP Diagnostic Task Force to understand the A
to train tomorrow’s experts.
to Z of diagnosing PRP. CLICK HERE to join.
23
Presentation of the Jean-Luc Memorial Research Award
After being diagnosed with pityriasis rubra
pilaris in 1997, Jean-Luc Deslauriers
(1948-2003) of New Brunswick, Canada,
established the PRP Support Group in
November, 1997 and became its guiding
force, moral compass and research advocate.
The Jean-Luc Deslauriers Memorial
Research Award has been created to
recognize specific achievements in PRP
research, undertaken to improve the
diagnosis and treatment of PRP.
The Sidney Kimmel Medical College’s
Department of Dermatology and Cutaneous
Biology at Thomas Jefferson University, has
been recognized for “significant and
substantial PRP research to improve the
diagnosis and treatment of PRP.”
Over 100 PRPers representing the PRP
worldwide community, shared their PRP
experience with the study team through
medical records, photographs, letters, emails
and surveys. We all await the publication of
their research paper.
The proclamation was presented to Dr.
Jouni Uitto, Dermatology Professor and
Chair at a gathering of TJU dermatology
Alumni at the Marriott Marquis in San
Francisco on March 21, 2015.
Left to right: Nick Ross, BA, MD Candidate (2015), Clinical Research Fellow; Matthew Keller, MD, Assistant Professor, Director,
Psoriasis Center; Jouni Uitto, MD, Ph.D., Professor and Chair; and Bill McCue, PRP Patient Advocate
24
PRPA thanks Beiersdorf for free Aquaphor and Eucerin
While he wasn’t asked, Luis Garcia, the brand
families who use large amounts of these
manager for Aquaphor and Eucerin seemed
products. The company will send a free case
delighted to be thanked for the program that
of the product, as long as specific instructions
has put cases of both products in the hands of
are followed.
PRPers in the U.S.
The member/patient must first contact
customer service at: 800.227.4703 to establish
an account with Aquaphor, prior to the
physician faxing a request. Once an account is
established, a doctor's
letter (on doctor’s
letterhead), with
patient/member contact
information, diagnosis
and treatment must be
faxed to 800.645.1391.
Beiersdorf, manufacturer of Aquaphor® and
Eucerin®, are continuing the program for
Dialogues in Dermatology is a monthly audio
program from the American Academy of
Dermatology that contains discussions
between dermatologists on timely topics. The
scope of Dialogues in Dermatology expanded
slightly when Dr. Shadi Karoush interviewed Bill
McCue about PRP and the PRP Alliance.
Shadi is a dermatologist at Massachusetts
General Hospital, a friend of the PRP
community and is a committed advocate for
patients with skin disorders, rare or otherwise.
A friend of the PRP community, Shadi was
presented with a PRP “Thank You” mug at the
Coalition of Skin Diseases Annual Luncheon.
And even more good
news for the PRP community: the request may
be renewed every three months.
25
The Fork in the Road
by Bill McCue, PRP Patient Advocate
On February 8, 2013, prpAlliance.com
was registered and the PRP Alliance
became real — at least for me.
Over two years have passed and there
is now a robust website, an archive of 18
newsletters, a database reflecting the
experiences of over 1,400 PRPers and
the foundation of a PRP SURVIVAL GUIDE
to serve both “active” PRPers and those
who have yet to be diagnosed.
Moreover, the mission of the PRP
Alliance has not wavered:
✴ The timely diagnosis of PRP
✴ A broader array of successful
treatment options for PRP
✴ Increased PRP research
The need to enlighten dermatologists
has become central to the PRP Alliance’s
strategic plan. Membership in both the
Coalition of Skin Diseases (CSD) and the
National Organization of Rare Disorders
(NORD) will enhance the effectiveness
of the PRP Alliance.
CSD and NORD membership requires,
however, incorporation as a non-profit
and 501(c)(3) tax-exempt status.
The out-of-pocket cost to prepare and
file Articles of Incorporation to the State
of Texas and the 501(c)(3) application to
the Internal Revenue Service is $928.
Additionally, CSD membership ($200)
and NORD membership ($25) will be
added. The goal is to raise $1,153.
This is where I ask you to support the
501(c)(3) initiative and CSD/NORD
membership. This is where I ask you to
buy one or more PRP “501(c)(3)” mugs.
✴ The unit cost for each mug is $20
✴ Shipping in the U.S. via PRIORITY
MAIL) and handling is included.
✴ Shipping outside the U.S. reflects
international postal charges
charges with a $10 credit.
Once $1,153 is raised from the sale of
PRP “501(c)(3)” mugs, the fundraising
campaign ends and our focus returns to
the PRP SURVIVAL GUIDE.
The PRP Alliance hopes to have the
501(c)(3) application approved by PRP
Awareness Day (November 6, 2015).
This can only be accomplished if we file
before May 1st. The clock is ticking.
CLICK HERE to order your PRP “501(c)(3) mug