Lantos Grant Winner: Hot Holders for Hope

Lantos Grant
Awareness Campaign 2012
Hot Holders for Hope
Ryan Juntti – PH Patient
Bonnie Patricelli – Mom/Caregiver

Lantos ????
• Living with daily pulmonary hypertension challenges,
patients, families and caregivers form plenty of ideas for
making the PH journey better. Those ideas may become
reality through the Tom Lantos Awards for Innovation in
Community Service.
• The grant program is named after the late Rep. Tom
Lantos, a longtime congressman from California who was
the original sponsor of our bill in Congress after his
granddaughter was diagnosed with PH.

2012 – Grant Application
Submitted 1/25/2012
Project Name: Hot Holders for Hope
Describe the need for your project and how it will benefit the PH community
1) It will provide an Avenue of Awareness spanning a diversified group of people. People are given "hot sleeve holders" for their cup at no extra cost
at most coffee shop locations.
It is estimated that the average Hot Drink consumer spends 70 minutes with their hot drink and in addition it is viewed by approximately 6 others,
whether sitting and chatting or in passing.
2) People in transit, walking to college, to work, hurrying for train or plane or bus may feel some of the PH symptoms but people brush it off until it
happens again and again. The sleeve holder could be a handy "brain trigger" to have it checked out and an easily kept reference stuck in a pocket or
purse as a reminder to look up more information at phassociation.org.
List the goal(s) of your project
The goal would be to have disbursed monthly, approximately 4,160, to a different target group. For example 3 months - like May, September and
January they would be disbursed at College Campus areas throughout the country, 3 months at Airports and Train Stations throughout the country,
3 months in Big Center Cities throughout the country, 3 months in or near Tourist Attractions throughout the country.
Describe your plans for carrying it out
We have been conversing with a company who has given us a quote of $5,000 for a custom supply of 50,000 sleeves for non-profit groups. We
submit the logo, wording, design and they will do the imaging, up to 4 color print, printing, promoting, distributing to the target groups of our choice,
shipping, tracking, all included.
Describe how your project could be adopted in other communities
This project could be promoted around the world, wherever they sell "Hot Drinks"
Estimate your timetable for execution of the grant
Beginning in mid-May having 4,160 Hot Holders distributed to College Campus areas, and thereafter distributing 4,160 Hot Holders to a different
target group every month across the country for one year.
Please describe the roles that other individuals or groups will play
Son and Mother, Patient and Caregiver will be designing and wording Hot Holders. Also working together coordinating with Hot Holder company.
We will be asking our PH email and facebook online friends opinions on our proposed designs when ready.
Itemized budget for the funds you are requesting for your project Budget: All inclusive quote for imaging, 4 color printing, shipping, distributing
Cost item 1: $5,000

2012 – Grant Award
Notice of Award - May 05/07/12
Bonnie and Ryan:
Congratulations! The review committee of the Tom Lantos Innovation in Community Service Awards has
granted your request for funding of $5,000 for your project entitled “Hot Holders for Hope.”
We are very pleased that with funding from Gilead Sciences, Inc., PHA is able to provide you with the
resources to carry out this innovative project.
Within the next two weeks, we will send you a check to cover your award as well as information on
reporting on your project when it is completed. In the meantime, it is my pleasure to share this good
news with you today!
Mollie Katz
Vice President, Community Engagement
Pulmonary Hypertension Association

2012 - Grant Goals
The goal would be to have disbursed monthly, approximately
4,160, to a different target group. For example 3 months - like
May, September and January they would be disbursed at College
Campus areas throughout the country, 3 months at Airports and
Train Stations throughout the country, 3 months in Big Center
Cities throughout the country, 3 months in or near Tourist
Attractions throughout the country.
The Work Begins….
Goals

Final Proof
Approved 6-18-12

Hot Holders for Hope - 1st Distribution
Summer Tourist Spots
BRITEVISION MEDIA
COFFEE SLEEVE ADVERTISING
Preliminary VENUE LIST
CAMPAIGN: PHA Awareness
DATE: July 2012
DMA Café Name Street City ST Zip
Boston (Manchester) Caffe Dello Sport 308 Hanover St Boston MA 02113
Chicago Bombon Cafe 36 S Ashland Ave Chicago IL 60607
Chicago Le Peep Grill 1000 W Washington Blvd Chicago IL 60607
Denver Taza de Cafe 3565 W 44th Ave Denver CO 80211
Houston CafÃ© Yvino 208 Travis St. Houston TX 77002
Los Angeles Hollywood Coffee 6464 Sunset Blvd Hollywood CA 90028
New York New Twin Deli 162 Madison Ave New York NY 10016
Orlando-Daytona Bch-
Melbrn
Stardust Coffee 1842 E Winter Park Rd Orlando FL 32803
Philadelphia Java Jane's 5421 Somer's Point Rd Mays Landing NJ 08330
Philadelphia Tuscany Cafe 230 S Broad St Philadelphia PA 19102
Phoenix (Prescott) Mountain Park
Community Church
2408 East Pecos Rd Phoenix AZ 85048
San Francisco-Oak-San
Jose
Cafe Francisco 2161 Powell St San Francisco CA 94133
Savannah Plantation Station 111 Lighthouse Rd Hilton Head Island SC 29928
Seattle-Tacoma 1201 Caffe 1201 3rd Ave Seattle WA 98101
Washington, DC
(Hagrstwn)
Jack's Fresh 1015 18th St NW Washington DC 20036
This preliminary list consists of target locations only and is subject to change without notice.

Hot Holders for Hope – 2nd Distribution
Colleges Starting Fall Session
BRITEVISION MEDIA
DATE: August 2012
Atlanta Dania's Gourmet- 26 Peachtree St NW Atlanta GA 30303
Baltimore One World Cafe 100 W University Pkwy Baltimore MD 21210
Cincinnati Kaldi's Catering 1212 Jackson St Cincinnati OH 45202
Detroit Amer's Deli 312 S State St Ann Arbor MI 48104
Hartford & New Haven College Coffee 258 College St New Haven CT 6510
Indianapolis Cafe Royale 620 W Stadium Ave West Lafayette IN 47906
Kansas City Global Cafe 8200 Massachussetts St Lawrence KS 66044
Minneapolis-St. Paul Taraccino Coffee 224 E Hennepin Ave Minneapolis MN 55414
Philadelphia Lola Bean 1325 Frankford Ave Philadelphia PA 19125
Phoenix (Prescott) CUPZ Coffee 777 S College Ave Tempe AZ 85281
Portland, OR Finickys Bagel C 5127 SW MacAdam Ave Portland OR 97201
Salt Lake City Coffee Noir 1035 E 200 S Salt Lake City UT 84102
San Diego Working Educatio 1313 Park Blvd San Diego CA 92101
Spokane Kafe America 406 Burrell Ave Lewiston ID 83501

Hot Holders for Hope – 3rd Distribution
Train Stations
BRITEVISION MEDIA
DATE: November 2012
Atlanta Food Land Go 74 Northside Dr SW Atlanta GA 30313
Baltimore Cafe Saint Paul 7 Saint Paul St Baltimore MD 21202
Boston (Manchester) Au Petit Pain 11 College Ave Somerville MA 2144
Chicago 7-Eleven 200 N Dearborn Chicago IL 60686
Los Angeles Yamazaki Bakery 123 Japanese Village Plaza Los Angeles CA 90012
Los Angeles Cafe Express 1000 E Santa Ana Santa Ana CA 92701
New York American Newstand 10 Cyprus Ave Brentwood NY 11717
New York Bagels By The Park 323 Smith St Brooklyn NY 11231
Philadelphia
Ardmore Station Café
6 Station Ave Ardmore PA 19003
San Francisco-Oak-San Jose Royal Donut 1090 Burlingame Ave Burlingame CA 94010
San Francisco-Oak-San Jose Caffe Roma 143 S El Camino Real Millbrae CA 94030
Seattle-Tacoma Coffee Junction 401 Harris Ave Bellingham WA 98225

Personally Distributed
We received an initial preview
shipment of 1,200 Hot Holders
so we distributed them to
coffee shops in several towns
near us, Barrington, Stratford
and Voorhees, New Jersey
Ryan was able to talk to people
about PH in the process

“There is coffee shop on my into work that is on the corner
of one of the busiest streets in Philadelphia, PA (18th and
Market) near the train station, etc. It is small but inside one
of the hotels that people stay at for conventions.” Bonnie
Personally Distributed

Mailed to PH Friends for Their Awareness Events
We received 1,200 more free Hot Holders from .
We offered these to other PH Friends on through Facebook and PH contacts
for Awareness Events
 Pam Carner – 800 Hot Holders - Cincinnati Group, Ohio
Distributed at Christ Hospital, also a restaurant Country Inn. Also at
University Hospital with a display and I gave some of the cup sleeves to the :
"Log Cabin Herb Society" and the Anderson Township Historical Society.
Dr. Engel's talked to over 50 nurses last week, United Therapeutics provided
lunch and gave out your hot cup sleeves.
 Diane Dauwalder – Fort Worth, TX – Used for Awareness Event
 Bonnie and Ryan – Shoprite – Laurel Springs, New Jersey

Hot Holders for Hope Used at Awareness
Functions

Functions - continued

Some Hot
Holders were
used at a
Church
coffee time
table. We
were told
several
people there
needed the
PHA
Information.

Women’s Health Conference – 1,200 Women
attended Camden County, New Jersey

Hot Holders for Hope Distributed
by
Across the Country to Select Cafes
Chicago, IL

Distributed by
Across the Country to Select Cafes continued
Washington, DC Philadelphia, PA

Goal Success
Our Goal was met and more
– The Hot Holders were distributed across the
country, in various seasons, in various areas
– Also we did not realize so many PH Friends would
be interested in having them at Awareness Events
– We thank BriteVision for giving us 2,400 to
distribute above and beyond what they agreed to
distribute

Lantos Grant 2013
Sometimes it’s PH – Early Diagnosis
Campaign
Ryan Juntti – PH Patient
Bonnie Patricelli – Mom/Caregiver

Goals of 2013 Grant
Project Name: Hope Hot Holders - Early Diagnosis
Describe the need for your project and how it will benefit the PH community –
“The average time between PH Symptoms onset and diagnosis is 2.8 years".
We need to get the information to doctors, and especially doctors just beginning their career, to at
least be aware of PH. To know that "even a small delay in diagnosis has a dramatic impact on
prognosis".
The Hope is the more awareness the doctors have of PH, and more doctors working for the cure, the earlier and
faster it can be treated.
1) To distribute the Hope Holders in cafeteria's in Medical Teaching Hospitals and Universities, and coffee shops
near Medical Teaching facilities.
2) Also plan to have a small amount held aside for Support Groups that would like to incorporate the Hot Holders
into their Awareness Events, perhaps at health fairs in their area. Also our goal is to reach each part/area of
the country –North, South, East and West.
Describe your plans for carrying it out
1) We have a company that has quoted us $5,000 for 50,000 holders - includes printing, revamping the design to
fit the holders, and distributing them. The sales representative we would be working with help organize a
target group at teaching hospitals, he also familiar with working with non-profit fundraising organizations.
2) Also we will enlist the help of other PH patients and Medical members of the PH communities for ideas of
Medical Facilities to distribute to where it would be most effective.
3) We plan to incorporate the Early Diagnosis Campaign - the Zebra and Horses with the PHA logo and website
and the Sometimes it's PH link.

Goals of 2013 Grant cont.
Describe how your project could be adopted in other communities
The project could implemented in any part of the world the uses hot drinks and gives out hot holders.
Estimate your timetable for execution of the grant
Would start working on in May and distributing by August and continue through end of April 2014.
Please describe the roles that other individuals or groups will play
1) Mother - caregiver and Son - PH patient working together to spread awareness and fighting for a cure.
2) Also we will enlist the help of other PH patients and Medical members of the PH communities for ideas of
Medical Facilities to distribute to where it would be most effective.
3) Also plan to have a small amount held aside for Support Groups that would like to incorporate the Hot
Holders into their Awareness Events, perhaps at health fairs in their area.
Itemized budget for the funds you are requesting for your project - Budget Item 1: All inclusive quote for
imaging, printing, shipping and distributing - from Mike Adler at
Cost item 1: $5,000

Final Proof
August 1, 2013

Compiling the Distribution List
Involving the PH Community
We sent emails to Support Group Leaders
Also, put a message on facebook offering the
Hot Holders to others for PH Awareness
month.
 We received over 30 responses
 We mailed boxes of 100, 300, 600 to 20 people

Our goal is to reach each part/area of the country – trying to reach North, South, East and West.
We ask for suggestions from Support Group Leaders and PHA Staff . Here is the original list
below listed by State. Working with Mike Adler of BriteVision we used the Cafes they have
connections with near as many of these suggestions as possible to come up with a distribution
list. The Cafes have to be willing to accept them also.
Person submitted Drs. Hospital or Cafe Location
Molly Katz (Dr. Fagan) *University of South Alabama Alabama
Matty Heenan Franz Rischard; Dr.
Steve Knoper
*University Medical Center at the University of
Arizona
Arizonia also serving New
Mexico
Molly Katz (Dr. Oudiz) UCLA School of Medicine - (Los Angeles) California
Molly Katz (Dr. Zamanian, Dr.
Perez)
Stanford University Medical School California
Perry Mamigonian Dr. Vijay
Balasubramanian
UCSF Fresno Center for Medical Education and
Research
California 93701-2302
Molly Katz (Dr. Badesch, Dr. Bull,
Dr. Ivy)
University of Colorado Denver Medical School Colorado
Doug Taylor Emory University in Atlanta, GA Georgia
Doug Taylor *Georgia Regents University in Augusta, GA (Where
I go!)
Georgia
Molly Katz (Dr. Lahm Indiana University Medical School) Indiana
Kim Lamon-Loperfido *University of Iowa Hospitals and Clinics – Java
House or Coralville, Iowa
Iowa
Molly Katz (Dr. Park) University of Maryland Medical Center Maryland
Molly Katz (Dr. Channick) Massachusetts General Hospital Massachusetts
Molly Katz (Dr. McLaughlin) University of Michigan Medical School Michigan
Molly Katz (Louise Durst, PHA
nurse leaders)
Mayo Clinic, Rochester, Minn. Minnesota
Molly Katz (Dr. Chakinala) Washington University School of Medicine Missouri (?)
Carol Lindstrom Dr. Austin Thompson University of Nebraska Medical Center in Omaha,
NE.
Nebraska
Melanie UMDNJ - Newark New Jersey - North
Melanie Newark Beth Israel New Jersey - North

**Janet Plock -Pulmonary
Hypertension Awareness/Support Group
of Binghamton, NY
*Our Lady of Lourdes Hospital, 169 Riverside Drive, Binghamton,
NY 13905
New York
Janet Plock Wilson Memorial Regional Medical Center, 33-57 Harrison Street,
Johnson City, NY 13790
New York
Janet Plock *Binghamton General Hospital, 10-42 Mitchell Ave., Binghamton, NY
13903
New York
Bonnie Patricelli Cooper Hospital New Jersey South Camden
Bonnie Patricelli Kennedy Hospital - Stratford – next to UMDNJ school New Jersey South Stratford
Doug Taylor -
Marilyn Mears -
Duke in Raleigh/Durham, NC North Carolina
Doug Taylor - Wake Forest in Wake Forest, NC North Carolina
Pam Carner Here are teaching hospitals in
Cincinnati , Ohio area:
Christ Hospital --513-585-200, University of Cincinnati Hospital--513-
584-1000,Kettering Medical Center--Dayton Ohio
Ohio
Molly Katz (Dr. Erzurum) Cleveland Clinic Ohio
Kim Lamon-Loperfido Case Western Hospitals Ohio - Cleveland
Molly Katz (Dr. Taichman, Dr. Palevsky) Penn Presbyterian Medical Center Pennsylvania
Molly Katz (Dr. Mathier, Dr. George, Dr.
Champion)
University of Pittsburgh Medical Center Pennsylvania
Janet Plock *Robert Packer Hospital, 1 Guthrie Square, Sayre, PA 18840 Pennsylvania
Mary Svikhart Hershey Medical Center Pennsylvania
Doug Taylor Medical College of SC in Charleston, SC South Carolina
Evette Britton Vanderbilt University Medical Center in Nashville, TN Tennessee
Molly Katz (Dr. Torres, Dr. Levine) University of Texas Health Science Center Texas
Marcia Beverly UTSW in Dallas Texas
Molly Katz (Dr. Elliott, Dr. Brown) University of Utah Medical School Utah
Susan Temple - Pulmonary Clinic at The University of Virginia Virginia
Charlotte McCabe Dr Ralph The University of Washington Medical Center in Seattle WA Washington (Seattle)

August 8, 2013 -
We just received the initial shipment hot holders - box of
1,200. They look great, thank you.
Do you have the final shipping list of cafe's that will be getting
them?
Thank you for all your work.
Bonnie and Ryan
Exciting - First Shipment

Final Distribution List of
Cafes through
Binghamton Nezuntoz 50 Pennsylvania Ave Binghamton NY 13903
Boston (Manchester) Fill-A-Buster 142 Bowdoin St Boston MA 02108
Denver Evil Bean 1515 Arapahoe St Denver CO 80202
Indianapolis Cafe Zuppa 320 N Meridian St Indianapolis IN 46204
Los Angeles Boba Loca 10946 Weyburn Ave Los Angeles CA 90024
Mobile-Pensacola (Ft Walt) Satori Coffee 5460 Old Shell Rd Mobile AL 36608
Nashville Carrie's Coffee 3102 W End Ave Nashville TN 37203
New York North Broad Food Mart 1410 N Broad St Hillside NJ 07205
New York Green Room 201 Lyons Ave Newark NJ 07112
San Francisco-Oak-San Jose Benkyoko - Japanese
Bakery
1747 Buchanan St San Francisco CA 94115
San Francisco-Oak-San Jose Cafe Murano 1777 Steiner St San Francisco CA 94115
San Francisco-Oak-San Jose Quickly 1522 Fillmore St San Francisco CA 94115
San Francisco-Oak-San Jose Terrace Cafe 2100 Webster St San Francisco CA 94115
San Francisco-Oak-San Jose Lutticken's 269 Campus Dr Stanford CA 94305
Washington, DC (Hagrstwn) Bun Cafe 6070 Greenbelt Rd Greenbelt MD 20770
DATE: September 2013

Total List Mailed/Distributed
Hot Holders for Hope – Early Diagnosis- Sometimes its PH – 2013 Distribution
Mailed Holders Contact Name Address Location Distributed State
9.1–9.31.13 46,000 BriteVision–M. Adler** List – All Country
BriteVision–M. Adler Mobile AL
BriteVision–M. Adler Los Angeles CA
BriteVision–M. Adler San Francisco CA
BriteVision–M. Adler Stanford CA
BriteVision–M. Adler Greenbelt CA
BriteVision–M. Adler Denver CO
BriteVision–M. Adler Indianapolis IN
BriteVision–M. Adler Boston MA
BriteVision–M. Adler Hillside NJ
BriteVision–M. Adler Greenbelt, MD MD
BriteVision–M. Adler Newark NJ
BriteVision–M. Adler Binghamton, NY NY
BriteVision–M. Adler Nashville TN
MAILED TO PH FRIENDS SO THEY COULD DISTRIBUTE TO CAFES AND USE FOR AWARENESS EVENTS
10.16.13 600 Matty Heenan Tucson, AZ Univ. Med. At Un. of Arizona AZ
11.12.13 200 Evan White Bloomington, CA Hospital, University CA
11.12.13 130 Lori Wilkerson Turlock, CA CA
11.17.13 300 Kristine Green** Grand Junction, CO Cafes in town-where S.G. meets CO
10.9.13 300 Doug Taylor** Augusta, GA/SC Regent Hospital GA
3.21.14 new 300 Jan Neumann Houma, LA. 70360 LA
11.12.13 200 Melissa Boster Foxtrot, MA Deli – she used to work MA
10.7 600 Stephanie Layer** St. Paul, MN United Hospital, St, Paul MN
Stephanie Layer Rochester, MN Sent to Dr. McGoon MN
9/15/13 200 Bonnie Patricelli Stratford, NJ Top Docs, Blood Lab, Rowan Univ. NJ
100 Bonnie Patricelli** Voorhees, NJ Coffee Shop NJ
200 Ryan Juntti Audubon, NJ Coffee House NJ
1.27.14 250 Brenda Gibson Canal Winchester, OH OH
11.10.13 150 Anne Stanton Philadelphia, PA Coffee Shops in Fairmont PA
11.12.13 200 Jody Lynn Dawson Pittsburgh, PA Allegheny General PA
11.21.13 300 Diane Roberts Pittsburgh, PH Children’s Hospital, Pitts. PA
9.23.13 250 Gloria Hamm Wilkes Barre, PA PA
11.7.13 300 Jeanine DiMauro Spring, TX Little Rock Med. School TX
4,580

PH Friends Spreading Awareness
I distributed 300 hot
holders to four local coffee
shops in Grand Junction,
Colorado. Each business I
went to was super
supportive and glad to
help. I distributed them
(with my three year old
son's help) in November as
part of bringing awareness
to our community along
with accepting a
proclamation (with Anna
Bower)declaring Grand
Junction Pulmonary
Hypertension Awareness
month. I am grateful to
have had the opportunity
to bring awareness to our
community! Thank you!
Blessed be,
Kristine Green

“One place is where we have started having
our PH support group meetings for LiPHe in
the Grand Valley (Colorado's western slope
group) and it is called Four Winds Coffee
and Tea.

Here is a picture of the
coffee cup sleeves that
we gave away at United
Hospital in St. Paul
Minnesota on
November 7, 2013. We
also had the coffee
sleeves in the cafeteria.
They were a big hit.
Thank you so much for
getting the Tom Lantos
grant and thinking of
such a great idea and
most of all for sharing
with all of us.
Stephanie Layer

I sent some to the
Rochester, MN support
group and to Dr. And
Bonnie McGoon in
Rochester. They were
going to put them in
the coffee shops in
Rochester and maybe
try to get them in the
mayo Clinic cafeteria.
Thank you again!
Great PH awareness!
Stephanie Layer

Ryan took Hot Holders to
Audubon, NJ, they were glad to help spread the word.

Hey, Bonnie--
I took the hot holders to Georgia Regents University in
Augusta, GA. My PH specialist is there and I showed the
hot holders to him and asked if he would endorse placing
them in the cafeteria. Of course he did. The cafeteria
manager could not have been more accommodating! He
asked if I could send him PH information/brochures to
place next to the hot holders. If the hot holders go back
into production, I would love to take them to GRU again
along with some of the brochures PHA has.
Great job you and Ryan did!
Best-- Doug Taylor

 Lori Wilkerson Salazar – California
“I gave them to the coffee shop at my local
hospital, they used them on cups of coffee sold
to doctor, support staff and visitors. From what I
was told they were a big hit.”
Emanuel Medical Center Turlock, CA.
 Jeannie DiMauro – Texas
Cafes in Bellville and Spring, Texas

Pictures from PHA
Daily Beat article
to promote
applying for
Lantos Awareness
Grant

1099 Gayley Ave, Los Angeles, CA 90024
1522 Fillmore St, San Francisco, CA 94115
Spreading Awareness

142 Bowdoin St, Boston, MA 02108
1515 Arapahoe St, Denver, CO 80202
Sometimes it’s PH – Early
Diagnosis Spreading Awareness

(1) To distribute the Hope Holders in cafeteria's in Medical Teaching Hospitals and
Universities, and coffee shops near Medical Teaching facilities.
(2) Also plan to have a small amount held aside for Support Groups that would like to
incorporate the Hot Holders into their Awareness Events, perhaps at health fairs in their
area. Also our goal is to reach each part/area of the country –North, South, East and
West.
 Our Goal was Met! The Hot Holders – Sometimes it’s PH - were
distributed North, South, East and West - 28 states - in and near
Medical teaching facilities.
Goal Was Met

Hot Holders for Hope - 2012
Sometimes it’s PH – Early Diagnosis – 2013
USA Coverage - PH Awareness

Who are responsible for Grant
Gilead for sponsoring the Grant
The Committee Members that vote on the Award Winners
To everyone at PHA Association for all your time, work, love
Mike Adler at BriteVision for all his help and concern
To all the PH Friends who supported us and spread Awareness – Early
Diagnosis - through this project.
THANK YOU TO ALL

Lantos Grant Winner: Hot Holders for Hope

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