August 2005

FOP MAKES
WASHINGTON
International Fibrodysplasia Ossificans Progressiva Association, Inc. (IFOPA)
BY
Vol. 18, NO. 4 -August 2005
PLEA
H OLLY P ULLANO
AND
E YAL G OLDSHMID
J
uly 13, 2005 marked FOP's first monumental foray
into national politics. IFOPA organizers and members
held a "Friendraiser" reception (as opposed to a
fundraiser) with national politicians in Washington, DC as
a means to increase FOP awareness and research funds.
Eight FOP patients and their families attended the event,
including Monica Anderson, Ian Cali, Steve Eichner,
Sophia Forshtay, Daniel Licht, Holly Pullano, Kim Shields
and Whitney Weldon.
The event, hosted by Senator Frank Lautenberg
(D-NJ) and Senator Rick Santorum (R-PA), marked a culmination of recent efforts by various IFOPA members and
families who shared the vision to have FOP represented
on Capitol Hill.
"The experience was humbling, impressive, and
exciting all at once," said Jeri Licht, mother of Daniel.
"Everyone in the FOP community owes a huge debt of
gratitude to each and every person who worked so hard to
make this reception such a grand success."
The day was marked with many special guest
Political power: FOP patients share the spotlight with Sen.
Rick Santorum (R-Penn.), left.
Taking on the Capitol: The IFOPA/USBJD reception was held in
the Lyndon B. Johnson Room in the Capitol building.
appearances, including co-hosts Senators Lautenberg and
Santorum. Other senators that stopped in during the
reception included Jon Corzine (D-NJ), Lincoln Chafee (RRI), Craig Thomas (R-WY) and John McCain (R-AZ). Each
of the senators wore a green FOP awareness bracelet,
spoke of their support for FOP and posed for a picture
with the FOP patients.
MORE POLITICS:
In addition, both U.S.
Marshall George Walsh and author
GARY WHYTE’S
Carol Higgins Clark were in attenPROC-LA-THON
dance. Clark inspired the audience
TA R G E T S
with a wonderful speech about
NEW JERSEY
moving forward from this event and
M AY O R S
not giving up in our fight for a cure
and treatment.
PA G E 3
Senator Hillary Clinton (DNY) also made an appearance to receive a brief about
FOP and a green bracelet. And if that weren't enough, the
Weldon family also met two additional senators, Senator
Olympia Snow (R-ME) and Senator Lindsey Graham (RSC), during their dinner following the reception.
"I appreciate the opportunity to host this bi-partisan briefing to raise awareness for this rare disease," said
Senator Santorum. "FOP is a terribly debilitating disease
which unfortunately has no known treatment or cure. I was
pleased to learn more about the various research that is
being done to advance the options for children and adults
suffering from FOP, particularly that of Dr. David Glaser at
the FOP Lab at the University of Pennsylvania. His
research holds the potential for curing other bone maladies such as arthritis,
C O N T I N U E D O N PA G E 4
Page 1
F O P Connection:
Meet the new Editor
International FOP Association
(IFOPA)
P.O. Box 196217
Winter Springs, FL 32719-6217
Phone 407-365-4194
Fax 407-365-3213
E-mail: [email protected]
Web Site: www.ifopa.org
The International Fibrodysplasia
Ossificans Progressiva Association
(IFOPA) is a 501(c)(3) charitable organization whose mission is Instilling HOPE
through Research, Education and Support
while Searching for a CURE for FOP.
The IFOPA was founded by Jeannie
Peeper in 1988 and the FOP Connection is
its quarterly publication. To help those
with FOP and their families, we print
information and ideas from our readers on
methods of management and care for FOP
and its consequences. As an organization,
however, we do not support or endorse any
particular treatment or therapy. We urge
everyone to always contact his or her
physician for final approval of any treatment choice.
Open invitation to our readers - The
Connection always seeks to improve the
content and quality of our newsletter. We
encourage our readers to provide us with
feedback and comments on the newsletter
as well as suggestions for future issues. We
also invite anyone interested in providing
material such as story ideas, articles, poems
and artwork to the editor. Anyone interested in contributing to the Connection is
invited to contact Eyal Goldshmid at
[email protected].
Editor: Eyal Goldshmid
Contributors: June Bainbridge,
Sanders Bernstein, Amanda Cali, Linda
Daugherty, Jen Dennings, Eyal
Goldshmid, Marilyn Hair, Melissa
Helmick, Julie Hopwood, Kyungho Hyun,
Hiroko Ito, Todd Kaplan, Lila Kennah, R.
Brian Kinghorn, Jeri Licht, Marsha Meyer,
Megan Pheif, Holly Pullano, Per Rittgard,
Chris Ruston, Tina Marie Smith, Sarah
Steele, Rainer J. Wargitsch, Carol Whelan,
Gary Whyte.
Page 2
Greetings!
My name is Eyal Goldshmid. I'm the new IFOPA
Editor.
I'm 31 years old and am from Chelmsford, MA. I
moved to the Orlando area to attend the University of
Central Florida in 1992. I've been here ever since.
I come to the IFOPA from the Orlando Sentinel,
with whom I worked with both as a Web site manager
and reporter. I have approximately ten years of writing and editing experience, both in freelance and staff positions, as well as a strong background in creative writing and literature -- have to put that English
degree to some use, right?
As Editor, I'd like to continue the traditions established by past
editors. Why fix something that isn't broken, right?
But at the same time, I'd like to take the FOP Connection and
IFOPA.org Web site in new directions. I hope to include more stories
and items about you, the readership, and obtain more firsthand observations and opinions about your experiences.
Also, I hope you won't shy away from supplying suggestions,
recommendations and the lot. After all, this publication is just as much
yours as it is mine. Over the years, I've learned that a printed medium
with a tuned-in, responsive and vocal readership always connects better
with its immediate readership. Plus, by adding all of this personality to
the publication, those who peruse its pages only on occasion will clearly
see what the IFOPA and its members are all about.
So, if you ever have any questions, comments or suggestions,
please don't hesitate to pass them along. I can be reached at the following email address: [email protected].
-- Eyal Goldshmid
Table of Contents:
Manual Chair, Recliner . . . 10
Nikken . . . . . . . . . . . . . . 11
FOP hits Washington . . . . 1,4 Trolley . . . . . . . . . . . . . 11
Meet the new Editor. . . . . . . 2 Summer I Took Anatomy . . 12
PROC-LA-THON. . . . . . . . . 3 Can Laughter Heal? . . . . . .12
Fundraising in Action. . . 5,6,7
Funds Thermometer . . . . . . 7
German Hockey Game. . . . .8
Kilamanjaro Climb . . . . . . . .8
J-FOP . . . . . . . . . . . . . . . . 9
Grand Voyager Limited . . . 10
Time Out for OT . . . . . . . .13
Vitamins . . . . . . . . .13
Announcements . . . . . . . . 15
Meet Megan Pheif. . . . . . . 15
Farewell Jennifer Snow. . . 15
LIFE News. . . . . . . . . . . . . 15
O
n December 20, 2002, in an effort to
Richard J. Codey, arrived. Inside was an Executive
enhance FOP awareness in New Jersey,
Department Proclamation from Codey, honoring the event
Gary Whyte sent a packet of information to and commending the volunteers for their effort in the "firstall 566 Mayors in the state. By November 2003, proclama- ever PROC-LA-THON in the State of New Jersey."
tions had been officially received and adopted by 200
The PROC-LA-THON was the result of two and a
mayors
half years of work for Whyte. He started his awareness
To step up his efforts further, Whyte held New
efforts as a means to help his friend's daughter, who sufJersey's first-ever PROC-LA-THON. The event, held on
fers from FOP. He soon found himself address politicians
June 14, 2005, was a telethon aimed at having New
about the disease and making regional impact. Along the
Jersey's remaining mayors adopt a Proclamation in
way, he made stops at the floor of the Assembly and
Support of FOP
Senate at the State
Awareness and
Capitol in Trenton, N.J.
Research.
and the State Capitol in
From 9 a.m.
New York and made
until 3 p.m. of that day,
additional presentations
Whyte and his team of
on FOP to U.S. conGARY WHYTE PUTS NEW JERSEY
36 volunteers made
gressmen and senators,
phone contact with the
state senators and
TO THE TEST
298 New Jersey mayors
assemblymen, governor,
who had yet to adopt
mayors, town councils
By Eyal Goldshmid and Gary Whyte
the proclamation. After
and county freeholder
speaking with them, the
boards.
group followed up on
So far, his results
the action by making 298 phone
have been outstanding.
calls, submitting 298 faxes and
"Exposure for F.O.P. has been
sending approximately 100
moving along very well," said
emails.
Whyte. "We've received
"I never thought that in
Executive Proclamations from
2005 I would still be seeking
Governor Arnold
'proclamations' from mayors in
Schwarzenegger and Governor
New Jersey," said Whyte. "To
Jeb Bush, as well as 11 other
me, it was a simple humanitarigovernors. We've received the
an request. Unfortunately not
New Jersey Governor's 2004
everything goes according to
Volunteer of the Year Award for
plan. I came up with the
Health on behalf of FOP. We
PROC-LA-THON idea when I
rang the opening bell at the
thought it might be beneficial to
American Stock Exchange for the
come in verbal contact rather
kick-off of 'National Bone and
than written contact.”
Joint Decade - National
The event was held at
Awareness Week.' Bills have
CEO Executive Suites in Scotch
been passed on behalf of furtherPlains, N.J and was spread
ing FOP Awareness and
over two of the office complex's
Research (SJR-43 and AJR-46)
conference rooms. Seymour
in the New Jersey State Senate
Stein, President of CEO
and Assembly."
Executive Suites, provided
Whyte said he wouldn't
Whyte with the accommodaknow the return of his PROC-LAExecutive Department Proclamation from the Office
tions, as well as 11 phones, four of New Jersey Acting Gov. Richard Codey.
THON for a few more months,
fax machines and one computer
since most proclamations are
-- all free of charge.
addressed at town meetings and then voted on for
"I cannot say enough about the 36 volunteers who approval. However, he noted, he did receive one immedimanned phones," said Whyte. "Their deep concern and
ate return from the mayor of South Amboy. That left him
their dedication is what made the PROC-LA-THON a com- only 297 mayors to go.
plete success."
"Hopefully that yield will draw the attention of peoOne of the day's greatest successes occurred
ple who can take it to the next level and ultimately get the
soon after the start of the event when an over-sized enve- funding increased that is received from the NIH," said
lope from the Office of New Jersey Acting Governor
Whyte.
PROC-LA-THON:
Page 3
o
steoporosis, bone
spurs and spinal cord
injuries."
Another highlight of the reception was a speech
given by Holly Pullano, an adult with FOP and a member
of the IFOPA Board of Directors.
"She was a glorious representative of people coping with the difficulties of FOP as she asked for financial
support from the government with passion, dignity, and
just the right amount of FOP details," Licht said.
According to IFOPA Chairman Amanda Cali, the
"friendraiser" was the result of Gary Whyte's tireless work
on behalf of FOP that led to the reception in Washington.
"Gary Whyte's work supplied the foreplay to what
we're doing on the national level, getting mayors, assemblymen and senators signing proclamations on behalf of
FOP in New Jersey and New York," Cali said. "Then
Hillary Weldon and her daughter Whitney were asked to
represent the disease and tell the Senators and
Congressman about FOP. That's where I came in."
In order to make the reception a reality, Cali
joined forces with Whyte, the Weldon family, University of
Pennsylvania FOP researcher Dr. David Glaser, IFOPA
Executive Director Linda Daugherty and officials from the
United States Bone and Joint Decade. Together the
group forged forward with the plan to get FOP to
Washington.
One of the first steps in this process was the decision of the IFOPA to hire George Sifakis of Axela
Government Relations LLC to represent the IFOPA in
Washington DC. Sifakis and the group immediately
began discussing how the team could secure federal
funding outside of the National Institute of Health for FOP
research.
Other actions included the advocacy of additional
funding and overall awareness of FOP, as well as a letter
campaign that has so far resulted in more than one thousand mailings and emails. In addition, Cali hoped Sifakis
would help to get federal commitment to assign funds to
CONTINUED
FROM
PA G E 1
FOP moms show their team spirit with Sen. Richard
Santorum (R-Penn.) and Sen. Craig Thomas (R-Wyoming).
Page 4
Holly Pullano, an adult with FOP and a member of the
IFOPA Board, addresses the crowd.
the FOP lab at the University of Pennsylvania through the
appropriations bill.
"We have had great success communicating the
details about FOP to members and staff on Capitol Hill,
which we feel is extremely important in our quest for more
federal funding for FOP research," Sifakis said. "We are
hopeful that through our efforts, Congress will consider
appropriating additional funding to FOP research. We see
our efforts in raising awareness on Capitol Hill as having a
major impact on the funding of FOP research and to raising overall awareness of FOP."
"When Amanda Cali gathered all the other FOP
moms around her with our green bracelets raised in hope,
it was another major emotional moment that made an
impact similar to Holly's speech," Licht said. "Our family
left with the hope that the future funding of FOP research
will include some Federal support and feeling honored to
have been a part of this remarkable event."
Dr. David Glaser was equally hopeful that the
efforts pay off in order to benefit those with FOP.
"We would like the money to fund the research
effort," Glaser said. "My hope is that the money will go to
offset the money we get from private foundations and
families. The government doesn't fund events, only lab
fees, so the money we receive has to go to labs and
such. But if we can get money, it will give some relief to
the families supporting much of the research. It will leave
more money to be used by those same foundations and
individuals for events the government will not fund, including IFOPA operations and family events and help in fund
other items, such as education and awareness programs,
supporting research in other programs and get-togethers
and symposiums."
Just as optimistic was FOP patient, Monica
Anderson.
"I was so excited about being a part of this special
day, and I was so happy to be involved," she said. "I was
so surprised that so many senators came to hear about
our cause. It makes me feel that something positive will
come from all of this, and I am praying that a bill will be
ACTION
IN
FUNDRAISING
SPENCER MAN FOUNDATION TO MATCH
IFOPA DRAWING PROCEEDS
BY
EYAL GOLDSHMID
T
he IFOPA will hold a special fundraiser drawing
on Friday, November 11, 2005 in Winter
Springs, Florida.
more than a decade.
"My son had
FOP," he said. "Like so
For the drawing, the IFOPA is givmany of these kids, he
ing away: an IBM laptop; a 15- or 17-inch
was an overcomer. He
LCD flatscreen TV; two (2) iPod minis
adapted, like turning the
(each with a gift certificate to iTunes); a
light on with his foot. He
swam a lot, was active.
Rave MP Arc 2.5 MP3 player (with headHe was tough minded,
phones); a Sirius Satellite Radio receiver
Spencer Man, age 3.
deter(no subscription included);
T I C K E T S
and a $100 American
mined, and that was a neat thing,
Express gift card.
we learned a lot from him.
Tickets for the drawing will be on
"When he passed away,
As an added incentive,
sale from Sept. 4 to Nov. 4 and
Mike Man, head of the Spencer
can be obtained by contacting the me and some friends put together
IFOPA office at (407) 365-4194 or a foundation to help fund
Barnett Man Foundation of
purchase them online (via PayPal) research. We continue to try to
Oklahoma City, will match the
at http://ifopa.org/donate.html.
first $5,000 raised by the event.
Tickets are $5 each or 7 tickets help and do something inventive
for $25. Those interested in sell- and hopefully this will do it. We
"We hope this will
ing tickets should contact the
want to try to help fund the
encourage other families or
IFOPA office. Our goal is to sell
IFOPA research at PENN on a
friends of families to help
1,500 tickets. Announcements
fundraisers any way they can
quarterly level. We want to help
will be made on FOPonline.
monetarily," says Man. "If they can
other people who are going through
get grants from the company they work with, if they
the same things. We don't want to step aside."
can go to their HR managers, a lot of companies will
For more information on the drawing, or if
match the donations. A lot of people don't know they
you would like to donate an item, contact IFOPA
can get those matching gifts."
Executive Director Linda Daugherty at (407) 365Man has been an active FOP advocate for
4194 or [email protected].
M OMS
BRAVE COLD FOR
AND
W HITNEY W ELDON
BY
G
IFOPA
MARSHA MEYER
rey skies and chilly air greeted
guests at the 4th Annual FOP
Fundraising Luncheon at the
home of Marsha Meyer in New Vernon N.J. But
that didn't stop more nearly 200 guests from
attending - quite a marvel, considering the event
usually draws 60 to 65 people.
Among the attendees were Carolyn
Kepcher, of NBC's hit "The Apprentice," and bestselling author Carol Higgins Clark. Their lively
Q&A with fellow guests proved a highlight of the
day. They also signed copies of their just-published books.
The function also featured A Chance
Auction, which included among its offerings a
spectacular Elsa
Peretti-designed
"Bone Cuff" bracelet
donated by Tiffany
& Co.
Hillary
Weldon, mother of
Whitney, who is
Carol Higgins Clark (left) and
afflicted with FOP,
Carolyn Kepcher.
spoke to guests
about her family's FOP journey. She said she was
deeply moved by the turnout and was happy to
see "moms helping another mom."
Ideas and plans for 2006 are already
underway.
Continued on Page 6
Page 5
M O R E F U N D R A I S I N G. . . .
Page 6
HULETT HIGH SCHOOL
MUSIC DEPARTMENT PLAYS
FOR ANTHONY OLSON
BY
LILA KENNAH
I
n movies, good almost always triumphs
over evil. However, that doesn't always
happen in real life, and we don't always
get our fairy tale ending.
But in our little world of Hulett, we've
been blessed with an opportunity to be the
Front row: Sarah Sowerwine, Raenell Edsall,
good guy's sidekick.
Rachel Ridinger, Anthony Olson. Back row:
Anthony Olson is a first grader at
Chelsea Parsons, Danya Clark, Dan Olson
(Anthony's brother).
Hulett Elementary School in Hulett,
Wyoming. He enjoys many things a child his
age should enjoy, in spite of the limitations FOP imposes: He loves hanging out with
his friends and being with his family, which includes older brothers Dan and Jason, an
older sister, Jessica, and his mom and dad, Rose Ann and Bob.
Anthony has touched the hearts of the entire community of Hulett with his funloving and genuine spirit, especially the members of the Hulett High School Music
Department. In fact, members of the band felt such respect for him that they decided
to make the annual Spring Pop's Concert a charity event for Anthony and FOP.
An amazing number of community members attended both nights of the concert. Everyone was generous with their donations, whether it was time, energy or
money. All funds collected from the concert will go both to the IFOPA and Anthony.
We hope our contribution will help to find a cure, so Anthony and others like
him can be the little girls or boys they've always wanted to be and have the chance to
grow up to realize their goals and dreams.
D
espite inclement weather,
more than 50 people turned
out to walk the various
trails and support FOP research during
"The Walk in the Woods to Cure FOP,"
which was held on April 24, 2005. The
event, held at Loantaka Brook
Reservation in Morristown, N.J., aimed to
spread greater FOP awareness among
the community and to raise funds for FOP
research.
Attendees included students from
the Delbarton, Kent Place, Pingry, and
Mountain Lakes schools, among others.
Organizers of the event included Max and
Katelyn Selver of Mountain Lakes, Lauren
Stokes of Kent Place, Sanders and
50 ATTEND 2ND ANNUAL
WALK IN THE WOODS TO CURE FOP
BY
SANDERS BERNSTEIN
Abram Bernstein of Pingry, and Chris
Zamierowski of Delbarton.
All participants showed their support of FOP awareness and research by
donning the new green FOP Awareness
bands and Walk in the Woods t-shirts.
During the event, many people in the
reservation noticed the participants and
their T-shirts and bands, asked them what
they were doing and what FOP was, and
then joined in themselves.
O
n May 6 and 7, 2005, we held our third “Licht
###
Garage Sale to Benefit the IFOPA.” As always,
it was a remarkable experience full of contrasts.
The Ackermans of New Rochelle have always gone
On one side, there was work, publicity, boxes and stress -- lots
out of their way to help IFOPA and the Lichts. Parents Debbie
of it. On the other, there was educating people about FOP and
and Ed have helped with all three Licht Garage Sales, and the
finding supporters and true friends we didn't
youngest Ackerman, Adam, donated many of
know we had.
his toys to raise money for the IFOPA and
RIPLE
Nothing shows you who you can
FOP research.
count on better than a fundraiser, and nothThis year, the oldest Ackerman
LAY
ing is as important to those of us with loved
child, Joshua, got in on the family hobby by
ones with FOP than doing what we can to
donating a portion of his Feb. 12 Bar
help.
Mitzvah money to the IFOPA. In addition,
“LICHT GARAGE SALE,”
The Licht family is deeply grateful
he also helped educate a whole new group
to the GS Committee, our volunteers, and
of people about FOP.
“LADIES NIGHT OUT,”
the entire New Rochelle community for its
Before the reception, Joshua
BAR MITZVAH
support. A special thanks to Usha Lungany.
placed IFOPA brochures on each table and
included a message on each one reading:
BENEFIT IFOPA
###
"In honor of my guests, I donated to this
For the last few years, Beth El
charity." In his speech during the ceremony,
Synagogue in New Rochelle, New York has
Joshua talked about how an article in the
BY JERI LICHT
held a "Ladies Night Out" to raise money for
FOP Connection inspired him to appreciate
its nursery school. This year, to honor Daniel
his life more.
Licht, part of the proceeds from the event went
Even though the Lichts were unable to attend the Bar
to the IFOPA -- thanks mostly to the urging of a friend of ours
Mitzvah because of an IFOPA planning meeting in Florida,
who received the annual Licht holiday letter asking for donaguests raved about the way Joshua integrated the battle
tions. The $50 admission ticket offered guests cocktails, bouagainst FOP into the festivities.
tiques, raffles and a performance by award-winning comediPeter, Daniel, Copper and I are deeply grateful to
enne Judy Gold.
Joshua for being such a genuine example of bighearted comThe Lichts are deeply grateful for the support of everypassion, and to the whole family for their neverending support
one in the Beth El, Ward School and Temple Israel communiand love.
ties for this event.
T
P
:
Focus on Fundraising . . .
This is our 2005 Fundraiser Thermometer. It reflects funds
raised for the IFOPA from events and programs that our members
sponsor. This does not reflect funds from donations or dues. Watch
the thermometer rise throughout the year!
In the 2nd quarter of 2005 (April 1, 2005 - June 30, 2005), our
fundraisers have raised $71,574.81. The IFOPA would like to extend a
special thank you to the many individuals who supported and were
involved in our recent fundraising events. We appreciate the following
recent fundraisers for attributing to the current amount raised:
$97,912.05
2nd Quarter Fundraisers
-
Beth El Ladies Night Out in honor of Daniel Licht
Coins for a Cure
FOP Awareness Bracelets
Licht Garage Sale in honor of Daniel Licht
Oyster Bay-East Norwich School Fundraiser in honor of Laura Rossano
Pop's Concert at Hulett High School in honor of Anthony Olson
Temple Israel of New Rochelle Religious School in honor of Daniel Licht
The 6th Annual Benefit Dinner in honor of Jasmin Floyd
The 11th Annual Find-A-Cure BBQ in honor of Stephanie Snow
Walk & Read-A-Thon Fundrasier in honor of Cody Hunt
Walk in the Woods to Cure FOP
Page 7
M
ore than 250 spectators attended a charity ice hockey match supporting FOP on March 19 in in
ORMER ERMAN
Dingolfing, Germany.
The contest pitted a team of former German national playNATIONAL PLAYERS
ers, each a former member of the EV Landshut, a professional club
near Dingolfing, against a group of players selected from the clubs of
TAKE ON SELECTION TEAM
the 2nd Bavarian League around Dingolfing. Erich Kuhnhackl,
Germany's ice hockey player of the century, who has scored 766
IN CHARITY MATCH
goals and 738 assists for 1504 points in 841 games, captained the
'EVL Allstars'. Other famous players included Alois Schloder, Bernd
BY RAINER J. WARGITSCH
and Gerd Truntschka and Bernhard Englbrecht, each legendary in
Germany first as players and then as coaches and General Managers.
The event was free to attend. Donations made towards FOP E.V. topped 3,500 euros. The EVL Allstars (national players team) supplied 650 euros of that sum.
The event centered around Stefan Weinzierl, the hockey-loving 17-year-old son of
Gertraud Weinzierl, whose father, Martin, is an ice hockey referee. Stefan's illness drew the
attention of other referees, who admired Stefan for the way he closely follows the matches he
sees and criticzes referee's decisions - both positively and negatively.
Stefan's enthusiasm towards ice hockey inspired Ralf Barth, an ice hockey referee
himself, to organize the charity match for FOP E.V. Head referee Toni Weitl, the 'team manager' of the EVL-Allstars, Georg Spiessl, and Albert Aschenbrenner helped Barth bring the idea
into reality. The EVL-Allstars Team immediately agreed to participate; the city council of
Dingolfing did not charge the organizers any rent for the ice rink.
"We are very satisfied, we did not expect this excellent result," said Gertraud
Weinzierl. "All donations will be used for research and development and for aids for effected
patients."
Before the opening face-off, Gertraud Weinzierl thanked everyone who helped make
the event possible. She also welcomed local politicians from Dingolfing and Moosburg,
Right to left: Stefan Weinzierl, Gertraud
Stefan's home town, as well as his doctors Dr.
Weinzierl, Dr. Schuster, Dr. Morhard and
Morhard and Dr. Schuster, to the event. Dr.
friends.
Frederick Kaplan, who traveled from
Philadelphia, USA, also was in attendance.
The game itself was fast and full of skillful play like trick shots and stick handling. The
final score was 12-9 in favour of the EVL Allstars.
After the match, members of both teams and guests met at the hotel "Raucherhansl"
near Dingolfing for a celebration dinner (the hotel owner agreed to serve dinner for the players
for free). During the meal, event organizers took the chance to thank both the players and
spectators for their efforts and donations.
Also during the ceremony, Dr. Kaplan took the chance to thank everyone involved for
arranging this event. He assured the audience that their donations would make a valuable conIn the third period....12:9
tribution towards the efforts of helping people with FOP.
F
GROUP OF
G
INTERNATIONAL
CLIMBERS MOUNT
KILAMANJARO
T
FOR
FOP
welve years ago, we were introduced to the Hopwood
family of Rochdale in Lancashire, England, and from
that time a close friendship was formed.
We knew that their daughter, Rachel, who will be twenty-one
in June, was suffering from a rare disease. However, we did not know
the enormity of this until a few years ago, when they discovered she
was suffering from FOP.
During a conversation about holidays with Chris Ruston,
General Manager of Center Parcs, I learned he was planning to climb
Mount Kilimanjaro and I requested as much information as possible
for Rachel, such as videos of the climb and such.
Soon after, I received a lovely letter from Chris, who
expressed his sadness at this disease. Following this, fund raising
efforts for Rachel and FOP began. Also, various events, helped by
family, friends and the local community, strengthened the link between
the Hopwood family and our family and friends.
-- JUNE BAINBRIDGE
Page 8
The climb up
Kilimanjaro had been in the
planning for almost 5 years, and
what started as a solo attempt
ended up having 2 brothers and
2 friends joining in.
The party of five flew
out in January 2005 and joined
up with 6 other climbers of various Nationalities on a 6-day
expedition. Each day was progressively harder but equally fun Left to right: Rachel
as the team camaraderie devel- Hopwood, Julie Hopwood,
oped and grew.
June Bainbridge and Chris
The final ascent began Ruston.
at midnight on a very cold (-20F)
Thursday morning and was extremely demanding both physically and
mentally. Ten hours after the start and with half the original team having given up through pain and exhaustion, the summit was reached,
although the scale of the achievement did not hit home until 2 days
later when everyone had safely returned to base camp.
Everyone had their individual reason for wanting to climb
Africa's highest mountain (19,336 feet). You return with a different outlook on life. It was great that all of us could use the experience to
raise funds for people who need support.
-- CHRIS RUSTON
J
-FOP was formed in September 2004 to
for the disease yet.
raise awareness of FOP in Japan and to
4) The disease
collect signatures for a petition to the coun- chronically affects daily
try's Ministry of Health, Labour and Welfare. The life.
group, comprised of FOP patients and their famiAs of
lies, wants its home country to acknowledge
February, 2004, 121 disFOP as an intractable (incurable) disease.
eases are acknowledged
Once FOP is acknowledged as an
as intractable in Japan,
intractable disease, J-FOP hopes the Japanese
including Meniere's
government will promote research, provide med- Disease, Sudden Hearing
ical care facilities, reduce medical costs, improve Loss and Chronic
Yuko Toguchi, founder of
community based health care,
Pancreatitis. J-FO.
medical care, and welfare
Of
services, and enhance
those 121 intractable
quality of life for FOP
diseases, 45 are claspatients. In addition,
sified as serious,
G ETTING RESULTS , SIGNATURES
J-FOP hopes a persuch as Multiple
son with a disability
Sclerosis,
IN THE FAR E AST
will be provided with
Myasthenia Gravis,
home visit examinaand Behcet's
tions and counseling,
Disease.
BY H IROKO I T O
home help services, short
According to
stays in
Yukimi Kitaoka, a 20-year-old
facilities (so that careFOP patient, FOP hasn't been classified as an
givers can rest), and any
intractable disease because "FOP is so rare that
equipment that they may
no one knows such a disease exists. Most docneed. Furthermore, J-FOP tors in Japan don't even know about it. But colhopes a person who is
lecting signatures has given me an opportunity
seriously disabled will
to talk to people and raise their awareness. One
have all medical expenses of my friends said to me, 'I've long hesitated to
related to that disability
ask you about your disease. Since I now know
waived and also be provid- who you are, we're going to be close friends and
ed with a monthly
more, aren't we?'"
allowance.
So far, J-FOP has collected about
20-year-old Yukimi
"There are about 20
370,000 signatures. The petition will be delivered
Kitaoka
people with FOP in
to the Ministry of Health, Labour and Welfare via
Japan," said Yuko Toguchi, founder of J-FOP.
the Diet on May 19, 2005. J-FOP members hope
"We also want to reach out to and tell all the
the petition will be approved soon.
FOP patients in Japan that they are not alone."
"Our ultimate goal is to help find a treatCurrently, the Japanese government fails
ment and a cure for FOP. That's why we have
to recognize FOP as an intractable disease,
gathered signatures for the petition," said Natsue
despite the fact that FOP fulfills its four criteria
Tsuruta, a representative of J-FOP and the mothfor it characterizing the disease as such. The cri- er of an FOP patient. "If FOP is acknowledged
teria for this classification are as follows:
as an intractable disease, the government will
1) Less than 50,000 Japanese claim hav- promote research for it. A petition with many siging the disease.
natures is a powerful and an effective vehicle for
2) The disease is of unknown cause.
these governmental changes, and there are
3) No effective treatment has been found
many precedents for this."
J-FOP:
Page 9
M
y name is Per Rittgard and I live in Gothenburg,
Sweden. I was diagnosed with FOP at age 4, and I
PER RITTGARD REVS IT UP IN HIS
am now 48 years old.
I took my driver's license test in 1974 when I was 17,
CHRYSLER GRAND VOYAGER LIMITED-02
which is one year before the legal age in Sweden. Today I
drive a Chrysler Grand Voyager Limited-02, equipped with
an EMC four-way joystick system. The vehicle is also
equipped with a ramp and has a lowered floor because I use a Permobil
electric wheelchair. I drive my car while sitting in my Permobil.
Thanks to the EMC system, I can drive and control the car safely
with the only smallest movement of either hand. In my opinion, the system works really well.
The first joystick driving system was comletely mechanical. It
was built in Norway in 1989. The second one was an English-Swedish
composite built in 1995. The system I use today is called EMC, and it's a
dream to drive. The only problem I've experienced is that it has a high
learning threshold. By that, I mean you have to practice for quite some
time before you learn how to drive and control the vehicle safely.
At present, I'm living a good life with my team of assistants. I am Per Rittgard burns rubber in Gothenburg,
able to work part time. Three times a week, I go to the shooting range to Sweden.
shoot some practice rounds. In addition, my team and I travel often in
Sweden and Europe. Last summer we were in Scotland for three weeks; while there, I drove some 300 miles on narrow
Scottish roads. On May 28, 2005, I'm having a BBQ for assistants and some friends.
I hope every FOP patient out there keeps on living their lives 'til the wheels fall off.
-- PER RITTGARD
HYUN
BUILDS MANUAL CHAIR, RECLINER,
BOOK HOLDER FOR
I
TOP: Grimm (left) and Hyun at Sanibel Island, FL in
Nov. 2003. BOTTOM LEFT: Grimm at Lewis and Clark
State Park in South Dakota. BELOW RIGHT Grimm’s
manual chair. The footrest, says Hyun, is ‘made of 1/4inch-thick alumnium.’
Page 10
MARY GRIMM
built a manual chair, a recliner and a book
holder for Mary Grimm. I hope it provides
some ideas for those looking for devices to
make life a bit easier both for the person with
FOP and the caregiver.
If people have any questions, they can
contact me at: Kyungho Hyun,
916 Downs Rd., Champlin, MN 55316, 763-3230071.
-- KYUNGHO HYUN
NiKKEN’S MAGNETIC THERAPY HELPS
CODY DENNINGS WITH SLEEP, PAIN
BY
JEN DENNINGS
I
n my continual search to find alternative therapies that would help my
nine-year-old son, Cody, in his battle against FOP, I was introduced to
a wellness company called Nikken.
Although Nikken is a 30 year old, multi-billion dollar global company, headquartered in California, I had never heard of them until
recently. My best friend's sister works with a physician, Dr. Maureen
Hayes, an anesthesiologist and pain management specialist at the
University of Texas Medical Branch hospital in Galveston, Texas and an
independent Wellness Consultant with Nikken. Dr. Hayes had heard
about Cody's challenges and came to our home to educate us on her
company and its unique products.
Nikken is a pioneer in energy products, including magnetics,
infra-red, negative ions and bio-directed nutrients. Although my husband,
Dave, and I were not familiar with these technologies, we were quickly
impressed by the products, which Dr. Hayes left for Cody to try, as well
Cody Dennings.
as Cody's response to them.
As Dr. Hayes explained to me, all living things are dependent on
energy fields for survival, especially magnetic fields such as the one provided by the earth. The cells in our bodies actually communicate by an electrical charge, and the earth's magnetic field aligns these charges so that information can be
passed effectively and efficiently between cells. Our blood, for example, causes a magnetic current as if flows through
our bodies because of iron it contains.
That night, Cody slept on a magnetic mattress pad and was covered by a comforter that contained both magnets
and far infra-red emitting ceramic fibers. He was "cocooned" in natural energy, which allowed him to reach a deep
restorative sleep.
Nikken explains this effect as the "Greenhouse effect" - just as plants thrive in a greenhouse, so do our bodies
when they are placed in the best possible environment. These natural energies help negate, on a cellular level, the toxic
elements of the environment we live in. Because we are surrounded by electromagnetic fields created by electricity, such
as those created by TVs, computer and cell phones, and because we eat too many over-processed foods and spend too
much time indoors, we are often unable to replenish our energy reserves in an efficient, natural manner. However,
Nikken's products aid in restoring those elements to the body.
These products have not stopped Cody's flare-ups, but they do help him to sleep more comfortably and experience less pain. Cody sleeps on a magnetic mattress pad every night, and he is now sleeping through the night instead of
waking up repeatedly in pain.
In fact, we have been so impressed by Cody's responses that we have joined the company in spreading its word
on wellness. We would be more than happy to share this information with anyone who would like to learn more about
these technologies.
For more information, please contact me at [email protected] or visit the Nikken Web site at
http://www.nikken.com.
T
rolley was made by
medical physicians
to work with an upright bed, so I could get
about as my muscles had
turned to bone.
I use the trolley to get about the house, so I'm not stuck in one
room, and I even use it go outside if the weather is good.
I could not do without Trolley, since it makes me mobile again. With
being caught in the standing position I'm either lying in bed or using a
reclining wheelchair.
-- R. BRIAN KINGHORN
ROBERT BRIAN KINGHORN
CALLS TROLLEY A BENEFIT
FOR FOP PATIENTS
Page 11
L
ast summer, I took Biology 2130, Anatomy
and Physiology. In the past, I have avoided
HE UMMER
TUDIED NATOMY
lab science because I sit reclined in a
power wheelchair and can't lean forward to peer
N SSAY
into a microscope or participate in a wet lab.
But life science is required for the
Bachelor of Arts degree that I am working
BY SARAH STEELE AND MARILYN HAIR
towards at Seattle Pacific University, so I signed
up for the course. It met 5 days a week for eight
weeks, with lectures from 7:30-10:15 and a lab from 10:30-12:30. The professor's prediction turned out to be true, that
the students "live, eat and breathe" anatomy and physiology.
The Department of Vocational Rehabilitation (DVR) helps me go to college. DVR pays for my books, part of
tuition and a full-time attendant. But DVR didn't help with
summer school. Thankfully, my family came to my rescue.
My dad drove me to school. He is a professor at SPU, and
he worked in his office while I was in class, so I could call
on him in case of emergency. My mom volunteered to be
my attendant in lecture class and lab, and she helped me
study the textbook, which was too big and heavy to handle.
When my brother, Jonathan, got out of high school for summer vacation, he took over as my attendant and came with
me to lecture and lab. Jonathan, Dad and I ate a picnic
lunch on campus before we came home, where Mom and I
studied in the afternoons.
An exam was given every week, an objective test
on the lectures alternating with a lab test. The professor
offered me the accommodation of marking answers on the
exam instead of using the computerized answer form. He
Sarah Steele studies at home.
projected the microscope slides on the overhead and lowTIPS FOR EVERYDAY LIFE:
ered the percentage the labs counted toward my grade.
I've been going to specialist doctors my whole life,
CAN LAUGHTER HELP HEAL?
so every unit in my Anatomy and Physiology class taught
have long recommended using positive thoughts as a
me something new about my body. It was both fascinating
way to lessen or prevent the effects of illness and disand extremely painful to learn about what FOP is doing to
ease.
me. I've always had the hope that the FOP researchers will
Pessimism has been
find a cure and that my frozen joints can be released and
linked
to
increasing the chance of
the damaged muscles repaired so that I'll be able to move.
death
before
the age of 65.
It practically did me in when I found out that muscle cells
Meanwhile,
expressing
don't reproduce.
positive
emotions
has
been assoThere were times I thought I couldn't spend another
ciated
with
lowered
production
of
minute studying anatomy. But I stuck it out, and after two
the
stress
hormone
cortisol,
better
months I finished my life science requirement and earned
immune function, and reduced
10 credits and an A.
risk of chronic diseases.
Taking Anatomy and Physiology was a family projIf you're a pessimist - or know someone who is ect and more demanding than I dreamed it could be, but it
please
try
the following:
turned out to be very satisfying in the end. A lot of young
-Take
care of yourself by eating a healthy diet,
people graduate high school and go to college. It takes a lot
exercising
regularly
and getting adequate sleep.
of teamwork and determination for me to do it with FOP. I
-Express
your
emotional reactions honestly so
am grateful for the services I get from the Department of
you
can
effectively
deal
with what's bothering you.
Vocational Rehabilitation, Social Security, Medicaid, and
-Confide
in
someone
- your mate, a good friend
from Seattle Pacific University. I'm also grateful for my famior
a
trusted
relative.
ly, who supports my efforts and makes sure I have every-- View the cup as half full instead of half empty.
thing I need.
For more information on guided imagery and
When the goals are hard to reach, the victories are
other
forms
of wellness therapies, visit the
sweet indeed.
Mind/Body/Spirit section of DrWeil.com.
-- TINA MARIE SMITH
A portion of this essay will appear in Finding Magic Mountain, by
[email protected]
C.M. Zapata, forthcoming in 2006, by Avalon Publishing.
T
S
IS
A E
A
:
I
Page 12
T IME - OUT
OT
FOR
With OT Melissa Helmick
W
elcome to
summer!
I hope you've
all had a wonderful
break from your
schedules, classes
and homework!
As Occupational Therapists,
we, as well as all health professionals, are concerned with proper nutrition. Additionally, OTs are involved in
activities of daily living like dressing,
eating, cleaning, bathing, etc.
For this issue, I thought it
would be fun to write about some very
delicious, yummy SMOOTHIES -- a
cool and nutritious summer drink!
The biggest appliance you will
need is a blender.
Place all ingredients, except ice, in a
blender. Blend until smooth. Add ice,
a little at a time, and blend until
smooth.
SERVES 4
BLUEBERRY SMOOTHIE
My whole family loves this!
Ingredients:
2 bananas, peeled
1 cup banana yogurt (I have trouble
finding just banana yogurt so I use
the baby banana/strawberry yogurtmade from whole milk so higher calories or low fat strawberry/banana
yogurt)
2 TBS. honey
1/4 tsp. cinnamon (optional)
20 large ice cubes
I
Ingredients:
2-3 cups sliced watermelon
1 cup sliced cantaloupe
¼ cup strawberries
1 cup plain yogurt
2-3 cups ice
Ingredients:
1 cup orange juice
2 cups plain, low fat yogurt (I think
you can try any flavor!)
1 cup frozen blueberries
honey to taste
Blend all ingredients until smooth.
Combine all ingredients in a blender,
blend until smooth.
If you really like smooth
smoothies, use crushed ice instead of
ice cubes.
Once made,
serve immediately. To
make a
smoothie
thinner, add
extra
amounts of
liquid; to
make thicker,
add ice or
frozen fruit.
Also, make sure you blend all
ice and frozen ingredients long
enough to ensure that no large
chunks of ice are left in the drinks.
Also, watch out for chunks of ice
when you pour your drink into the
glass.
Happy sipping, and don't forget the straw!
There are no fat grams if you use low
fat yogurt, so adjust if you want someuse whole milk yogurt. There are 6
grams of protein in this shake.
SERVES 4
BANANA BLAST
WATERMELON SMOOTHIE
PEACH REFRESHER
Ingredients:
3/4 cup peach nectar or apple juice
1 cut up banana
1 cup low fat peach yogurt
2 cups peach slices
2 cups of ice
Place all ingredients in a blender and
blend until smooth.
SERVES 2
n August 1999, I was introduced to my future brother-inTIPS FOR
law, who, during a 'get to know
EVERYDAY LIFE: the family' after-dinner conversaUSING VITAMINS tion, asked me if I had ever tried
vitamin supplements as an alternative therapy for the aches and
pains of FOP. Little did I know, that
question would open my eyes up
to a whole new world.
I told him my body had
year-round aches and that I was
hesitant to take prescription medications. But at that time, I said, I
was willing to try anything, as long
as it was healthy. He said that taking Vitamins E and Selenium really
SERVES 4
###
Additional suggestions for
making smoothies:
helped with his bad knees. So I figured what the heck!
I went to my local drugstore and picked up three
bottles of vitamins: one of multi-vitamins (without iron),
one of vitamin E and one of Selenium. I experienced a
noticeable change less than one week after taking the pills
-- and I still take them semi-regularly to this day. I have
since added others such as glucosamine and cranberry
tablets to my medication rotation.
Although I still require pain management medication during certain times, I believe these vitamins
enabled me to take fewer narcotics than other FOP-ers
in my condition. I suggest you ask your doctor before you
take anything, and I do not endorse anything. You never
know what you may be allergic to, as I know, everyone's
body is different. Still, those FOP-ers who want to try a
healthier alternative may want to give it a shot.
--TINA MARIE SMITH, [email protected]
Page 13
A N N O U N C E M E N T S A N D EVENTS
FOURTH FOP SYMPOSIUM
IN THE WORKS
We are very excited to announce that the
IFOPA is busy planning the Fourth FOP Symposium! To
make it a reality, we will need everyone to help raise the
funds needed to support this vital meeting.
We have our sights set on holding this special
event in either 2007 or 2008. However, due to the discovery of so many new patients since the last symposium, our resulting need for more hotel rooms, and the
rising cost of hosting such an event, the format for the
symposium will be different than it has been in the past.
We will update everyone on our plans as they develop
over the next year.
If you would like to get involved with fundraising
for the Fourth FOP Symposium, please contact the
office or email our Executive Director, Linda Daugherty,
at [email protected] and let her know. Thank you!
AUSTRALIAN FOP MEETING
IN THE WORKS
My name is Damian Jones. I live at Phillip
Island, Victoria. Like you I suffer from FOP. I am writing
in regards to the possibility of having Australia's FOP
patients getting together in Melbourne.
In 2000, my family and I were lucky enough to
meet patients and families from around the world at the
FOP Symposium in Philadelphia. While there, I met Dr.
Kaplan and his team of doctors, and they opened my
eyes to the world around me. Even though I have FOP,
I saw how others lived with FOP and coped with the disease. The experience had a profound effect on me.
Since then it has been my goal to gather Australian
FOP patients together.
Dr. Kaplan from Philadelphia, Dr. Rodgers from
Melbourne and myself wish to meet you and other specialists at the gathering. (I have spoken with other doctors and specialists, who are also interested in attending.) Together, we hope to further understand the questions currently being asked about FOP.
Accommodations, conference rooms, transport, meals
and activities will be arranged. The date of the event is
still to be announced.
I would love the chance to meet all you Aussie
FOP-ers, so please let me know what you think. WE
CAN MAKE THIS HAPPEN!!!!!
For more information, please contact me at the
following address:
Damian Jones
P.O.Box 587
Cowes, Victoria 3922
Ph 03 59522137
Page 14
UCSF
NOW RESEARCHING
FOP
Experts in both pediatric and adult orthopedics,
orthopedic surgery and rheumatology at UCSF Medical
Center are among the few in the country who readily
diagnose and treat FOP. In addition, researchers at
UCSF are currently investigating the misdiagnosis rates
in FOP as well as the most common causes for misdiagnosis.
Dr. Joseph Kitterman, neonatologist at UCSF
Children's Hospital, has collaborated with Dr. Frederick
Kaplan, chief of the Division of Metabolic Bone
Diseases and Molecular Orthopaedics at the University
of Pennsylvania Medical Center, and others on a study
regarding the frequency of fibrodysplasia ossificans progressiva (FOP) misdiagnosis and the complications
resulting from these errors in diagnosis. Kaplan is currently conducting a major research project that aims to
understand the cause of FOP. It is likely that based on
Kaplan's research, clinical trials of potential treatment
options for FOP may be undertaken in the relatively
near future.
Experts at UCSF include the following: Sigurd
Berven, M.D, Robert Goldsby, M.D., Joseph A.
Kitterman, M.D., Hanmin Lee, M.D., Kerstin Morehead,
M.D., rheumatologist, Bio TK, Jeffrey Tabas, M.D., Emily
Von Scheven, M.D., Director of the Pediatric
Rheumatology Clinic, Bio TK.
For information about becoming a fibrodysplasia
ossificans progressiva (FOP) patient at UCSF Medical
Center, please call (415) 476-7242 or write Dr.
Kitterman at the following address:
Dr. Joseph A. Kitterman
UCSF Medical Center
533 Parnassus Ave., UC Hall U-504
Box 0734
San Francisco, CA. 94143 - 0734
DID YOU
KNOW
.... ?
THE $2.3 MILLION ANNUAL RESEARCH BUDGET FOR
THE CENTER FOR RESEARCH IN FOP AND RELATED
DISORDERS AT THE UNIVERSITY OF PENNSYLVANIA IS CURRENTLY FUNDED BY:
85% FROM FAMILY FUNDING/DONATIONS
* THE INTERNATIONAL FOP ASSOCIATION
* IAN L. CALI FOP RESEARCH FUND
* THE WHITNEY WELDON FOP RESEARCH FUND
15% FROM INSTITUTIONAL SUPPORT (NIH/NIAMS,
ORTHOPAEDIC RESEARCH AND EDUCATION FOUNDATION)
THE
MEET MEGAN PHEIF:
NEW IFOPA BOARD MEMBER
I
grew up in Sausalito, California. I
have a twin sister, Monika Kaplan,
and younger sister, Sara Olsen.
I attended University of
California at Berkeley. I love architecture and design. I own my own business
representing a textile company and a
boutique rug company in Northern
California. I currently live in Mill Valley,
CA with my husband, John, and two chil- Megan Pheif, the
new IFOPA Board
dren, Hayden, five, and Elsa Lilli, one
Member.
and a half. Hayden was diagnosed with
FOP when he was two and a half.
In between being a mom, working and holding the annual Hayden's Hope fundraiser, I enjoy running, mountain biking,
yoga and skiing - as well as the occasional lying on the couch
with a good book.
I’m excited to be a part of the Board and become more
actively involved in the IFOPA.
My biggest dream is to get that call from Dr. Kaplan,
saying that they have found a cure for FOP. I know it will come
true some day soon and I want to do what I can to help.
-- MEGAN PHEIF
IFOPA THANKS JENNIFER SNOW
FOR HER WORK
O
n May 31, 2005, Jennifer Snow retired from her position
as Board Member with the IFOPA.
The IFOPA wishes to thank Jennifer for her 11 years
of devotion, her oustanding fundraising efforts and her countless
hours of volunteering, which have helped us grow as an organization and taken us closer towards our goals.
NEWS FROM LIFE
This section includes the latest news from the IFOPA’s LIFE committee.
LIFE stands for Living Independently with Full Equality.
In the May FOP Connection, donated equipment was offered to the FOP community from the estate of IFOPA member
Elaine Klebe. Several inquiries were received.
As a result, Elaine's bed, wheelchair and two lift chairs are being given to five IFOPA members who live across the United
States. Quality of LIFE Awards to these individuals will help pay moving costs.
The IFOPA is grateful to Elaine for sharing these items that improved her quality of life. Thank you to her friend, Dennis
Peterson, for making local arrangements to ship the equipment.
-- MARILYN HAIR, LIFE Award Chairperson
QUALITY OF LIFE AWARDS
BOBBY’S BED
The Quality of LIFE Award (QLA) was developed to
assist FOP members (that are also IFOPA members) to live more
independently in their daily lives. If you need a piece of equipment (such as a bed or tools and gadgets for living independently), assistive technology, tuition or registration for a class that
would increase your independence and quality of life, please
apply for a QLA. The Award does not assist with any medical
related services.
The application for a QLA is available for up to $500 per
member, per year, or $1000 (every 2 years, per member) for a
wheelchair. To find out more go to the IFOPA web site at
www.ifopa.org. Find it on the home page under the Members tab,
or go to http://www.ifopa.org/lifeaward.html. Thanks to the work of
many translators, the application is included in nine languages
(Japanese, French, German, Portuguese, Spanish, Polish,
Serbian, Turkish and Ukrainian).
The funding for QLA comes from individual donations.
Funding is limited to those funds allocate to the LIFE committee's
QLA. If you would like to help, please send your donation, or
designate a portion of the proceeds from your FOP fund-raiser, to
the IFOPA for the QLA Fund. This program is making an incredible difference in the lives of people with FOP. Thank you for your
support!
In the May 2005 Connection, an
article featured the horizontal-to-vertical bed
and asked if anyone would be interested in
this specialty bed. The IFOPA has received
one request.
If you have difficulty getting in and
out of bed and this bed would help you,
please let us know. Once we know how
many people this bed could help, the IFOPA
will try to secure funding through grants.
Contact LIFE Committee chairperson, Marilyn Hair at
[email protected] or 425-882-9531, if this bed could improve
your quality of life.
LIFE EQUIPMENT CLOSET
The LIFE Committee would like to establish a lending
closet to share equipment not being used with FOP members
who need it.
If you have a gadget or sleeping aid or some durable
medical equipment to lend; or if there is an item you would like to
borrow, please contact Marilyn Hair at [email protected],
425 882-9531 or 14809 NE 66th St., Redmond WA 98052 USA. I
will advertise the items that are available or requested.
DISCOVERY HEALTH
FEATURES
FOP
This article is a follow-up from last fall: On May 23, 2005, Discovery Health television aired a 50-minute program called
"Medical Incredible." It tells about half a dozen rare conditions and medical emergencies, including 15 minutes about FOP. Dr. Fred
Kaplan and IFOPA members Sarah Steele and Damien Jones were featured in the program. The IFOPA office has a copy of the
video. Contact them if you would like to borrow it.
Page 15