Article on Page 2 - Hemophilia Federation of America

Transcription

Newsletter of the Hemophilia Federation of America
Issue 15 Volume 10 • Winter 2008
Article on Page 2
Honor Roll of Corporate Sponsors page 14 • Scholarships page 12-13 • Symposium Registration Forms page 8-9
Industry News page 7 • Dear Jill Q&A’s page 6 • Calendar of Events page 15 • Agenda for 2008 Symposium page 3
OFFICERS
Carl Weixler, President
Chad Stevens, 1st Vice President
Donald Akers, Jr., 2nd Vice President
Melinda Clark, Secretary
Tom Vaclavik, Treasurer
Barbara Chang, Past President
Kerry Brooks, Member-at-Large
Peter Bayer, Member-at-Large
STAFF
Susan Swindle, Executive Director
Carole Lancon, Program Director
Sandy Aultman, Administrative Assistant
Dawn Martin, Helping Hands Coordinator
Dan Bond, Blood Brotherhood Coordinator
Andree Gonsoulin, Communications Coordinator
PUBLICATIONS COMMITTEE
Bob Marks, Chair
Margie Yancey
Jill Williams
HFA MEMBER ORGANIZATIONS
Florida Hemophilia Association
Hemophilia Foundation of Nevada
Gateway Hemophilia Association
Hemophilia Foundation of Maryland
Hemophilia Association of the Capital Area
Hemophilia of North Carolina
Hemophilia of South Carolina
Northern Ohio Hemophilia Foundation
Hemophilia Foundation of Southern California
Oklahoma Hemophilia Foundation
Texas Central Hemophilia Association
Nebraska Chapter of the NHF
Lone Star Chapter of the NHF
Hemophilia Foundation of Northern California
Hemophilia Outreach of El Paso
Bleeding Disorders Association of the Southern Tier, Inc.
Hemophilia of Indiana
Hemophilia Foundation of Arkansas
Tennessee Hemophilia & Bleeding Disorders Foundation
Utah Hemophilia Foundation
Hemophilia Foundation of Idaho
Hemophilia Foundation of Illinois
Hemophilia Foundation of Minnesota/Dakota
Snake River Hemophilia & Bleeding Disorders Association, Inc.
Tri-State Bleeding Disorders Foundation - Ohio
United Virginia Chapter of the NHF
Sangre de Oro, Inc. Hemophilia Foundation of New Mexico
Mary M. Gooley Hemophilia Treatment Center
Dateline Federation is published four times a year by the
Hemophilia Federation of America, 1405 W. Pinhook Road, Suite
101, Lafayette LA 70503 Toll Free:800-230-9797
337-261-9787 Fax: 337-261-1787 Requests for permission to
translate and/or reprint contents of Dateline Federation should be
directed to the Editor at [email protected]. Dateline Federation
is available as a PDF file from the HFA web site at
www.hemophiliafed.org.
Disclaimer This material is provided for general information only.
The HFA does not give medical advice or engage in the practice of
medicine and recommends that you consult your physician or local
treatment center before beginning any form of treatment.
© Hemophilia Federation of America 2007
Mission The Hemophilia Federation of America is a national
non-profit organization that assists and advocates for the bleeding
disorders community.
Vision The vision of the Hemophilia Federation of America is that
the bleeding disorders community has removed all barriers to both
choice of treatment and quality of life.
2
Dateline Federation • Winter 2008
Youth Programs 2008 Soar
This year HFA’s Symposium will take children and teens off the
standard path and into an uncommon adventure. They will explore
nature, science and adventure more common to an international
destination in a series of fun-filled activities for the young, and the
young at heart. The Hemophilia Federation of America continues
to provide exciting and unique opportunities for kids, preteens and
teens in the bleeding disorders community, and 2008’s Educational
Symposium is no different! Not only will HFA host our first
overnight camp for teens, we will allow the young to navigate Little
Rock and to discover the adventure of building a robot- and that’s
just a taste of the adventures in store for 2008.
This year’s programming is better than ever, and we are proud to
announce a partnership with Accent on Children’s Arrangements,
Inc., who provides programming and event planning services
with safety and security, a high level of supervision, edu-tainment,
customized service and age-appropriate adaptation in mind.
Headquartered in New Orleans, Accent has opened up a world of
possibilities to the youth programs in 2008.
For kids aged 7 to 11, the HFA Kids program will provide a tour of
Little Rock’s Museum of Discovery, where they will be able to build
a robot and learn about the body through the health hall.
For the first time, HFA is offering an overnight camp for teens aged
12 to 18, at the Heifer International Ranch (45 miles Northwest of
Little Rock). In partnership with the Global Health Society (GHS),
this experience will include medical staff and personnel provided
specifically for our attendees. The 2008 HFA Teen Connection
theme is All One World: A HERD to be HEARD, and the teens
will explore the lives and uses of the domestic animals that Heifer
International has to offer to families all over the world.
As if that’s not enough! The HFA kids (4-6) will experience
programming from our volunteers who will share their special
skills and talents with the young and old. Judy Igleman and Mona
Constantini will share the “Bear with it” program for creative
healing for children with chronic illness. Lana Bienvenue will again
provide her expertise as a registered teacher of Integrative Yoga
Therapy with the presentation of “Yoga: The Power of Inner Peace.”
For more information about HFA’s 2008 Educational Symposium please refer
to page 3 of the this issue of the Dateline Federation. Registration forms can be
found on pages 8 and 9 of this issue.
HFA educational
2008 symposium
8
H
FA 200
The HFA 2008 Annual Educational Symposium will be
held May 1-4th, 2008 at the Peabody Little Rock, in
the heart of downtown Little Rock, Arkansas. Please
join us for the Symposium in the dynamic state capital
that boasts of exciting nightlife, a vibrant downtown
and entertainment district, and unique sightseeing and
attractions!
The weekend will be full of education and
entertainment for young and old alike! Check out the
agenda below for just a small peak into the wealth of
fun that awaits you in Little Rock.
For more information and to register for the 2008
Symposium please refer to pages 8 and 9 of this
newsletter. Note: Registration is due no later than
April 15, 2008.
HEMOPHILIA FEDERATION OF AMERICA
2008 EDUCATIONAL SYMPOSIUM AGENDA
Thursday, March 1, 2007
1:00 - 5:00 1:00 - 5:00 1:00 - 5:00 5:00 - 5:30
5:30 -7:00
9:00 - 1:00
9:30 - 12:30
11:00-12:00
12:00- 1:00
12:30- 5:15
12:30- 5:15
12:45- 5:15
12:45- 5:15 12:45- 5:15 1:00-1:15
1:30-3:00
3:00-3:30 3:30-5:00 5:00-6:30
6:30 pm Exhibitor Registration
Convention Registration
Exhibitor Set up Exhibitor Welcome Reception
(Exhibitors only)
Exhibit Hall Open
Friday, March 2, 2007
Attendee Registration
Exhibit Hours
New Families Reception
Welcome Reception
Childcare (Infant – 2yo)
Childcare (2 ½ - 4yo)
HFA Kids’ Program (5-8 years)
Children’s Program (9-12 years)
Teen Program (13-18 years)
Welcome and Introductions
•Carl Weixler, HFA President
Nutrition and Emotional Well-Being
•William R. Klinger, Ph.D., CTRS
•Charles P. Gilbert II, ACSW, BCD Break
Reimbursement Challenges
• Ken Trader (HHS)
• Terry Rice
• Julie Birkofer
• Ryan Faden (State Affairs, PPTA)
• Jan Hamilton
Exhibit Hours
Dinner and HFA Awards
8:00-10 PM Shawn Decker
Saturday, March 3, 2007
7:30- 9:00
8:00- 9:00
8:15- 5:15
8:15- 5:15
8:45- 5:15
8:45- 5:15 8:45- 5:15 9:00- 5:00
8:30 - 9:50 8:30-9:50
10:10-11:30
11:30- 12:30
11:45- 12:00
Breakfast
Coalition for Hemophilia B Breakfast
Childcare (0-2 years)
Childcare (3-4 years)
Children (5-8 years)
Children (9-12 years) Field Trip
Teen Program (13-18 years)
Infusion Suite
General Session
School and the Workplace Pain Management/Addictions
Exhibit Hours
Box Lunch / Pick up HFA Breakout Sessions
12:00- 1:30
HFA Dads in Action
12:00-1:30
HFA Focus on the Feminine
12:00-1:30
HFA Blood Brotherhood
1:30-2:30
2:30-3:30
3:30- 3:45
3:30-3:45
3:45-4:45
4:45-5:15
4:45-5:00
6:30pm
Treatment Options
Research Data and Data Collection
Break
Research Project
Hepatitis C- Transplants
HFA KID’s Presentation
Closing Remarks
Banquet
3
Program Updates Hemophilia Federation of America
HFA is proud to announce the
addition of Dan Bond to the
staff as the Blood Brotherhood
Coordinator. Dan, a native
Texan, comes to HFA after
a long career in speed-based
engineering (planes, cars, and
the occasional bicycle) and an
even longer experience with
severe hemophilia B.
Dan’s father was a researcher
at UTMB in Galveston, and
used his son in numerous projects. Dan caught the
engineering bug after earning a Bachelor of Science
in Aerospace Engineering from the University of
Texas-Austin in 1989, Dan went on to specialize in
drag reduction and thermodynamics and to develop
a computer model for the design of an aircraft engine
cooling system. Throughout his career Dan has been
part of design teams that have produced nine world
speed records, and is looking forward to working with
the HFA team to get the Blood Brotherhood program
up to speed.
Dan has been active in his local HFA chapter, lobbying
last year to persuade the Texas Legislature to create
a statewide bleeding disorders advisory board. Since
2005, Dan has served on the Board of Directors for the
Polen Education Foundation. He has been a counselor
for Camp Alipomeh for two years, and enjoys traveling,
kayaking, flying aerobatics, and catching up with his
daughter, Kerri, who just joined the Peace Corps, and
is headed to Africa. We can’t wait to see what world
speed records Dan can set with the Blood Brotherhood
program!
ARJ
Infusion
caring
Where
will facilitate the Dads in Action breakout section of
the 2008 Symposium. As part of the HFA Dads in
Action program mission, Joey and Tom will facilitate
a discussion that will provide training and support for
both fathers of children with hemophilia and men with
hemophilia who have children.
The HFA Dads in Action program provides training to
help fathers build strong bonds with all of their children
by giving dads support, a sense of belonging and keys
to strengthening family ties. It includes both fathers of
children with hemophilia and men with hemophilia who
have children. Says one father, “I had taken away from
my experience at Dads what I needed: the motivation to
become more responsible for my son’s medical needs.”
Tom Vaclavik has been an active board member of
Hemophilia of Indiana and an active member of
the HFA National Board of Directors since 2004.
His grandson was born with severe Hemophilia A.
Tom is very involved with the HFA Dads in Action
and Fundraising Committees. He has worked with
several other organizations, such as the Moose Lodge,
the American Legion, Special Olympics and Baxter
Hemophilia Advisory Board. Tom lives in Hobart,
Indiana with his wife Linda Holliday.
Joey Privat, father of sons, Kelly, 29, and Joshua, 19,
(both boys have severe Hemophilia A) served the
Hemophilia Federation of Acadiana, and now serves
on the Board of the Louisiana Hemophilia Foundation.
A HFA National Board Member since 2002, Joey is
employed by Factor Health Management.
All Brands – All Assays
All the Time!
SERVICES
is ...
Specializing in...
•Award Winning Nursing
•24 Hour On Call Service
•Infusion Education for
Patients and Families
Toll Free 866.451.8804
www.arjinfusion.com
4
Dads in Action Co-Chairs Joey Privat and Tom Vaclavik
Leading the industry in
scholarship opportunities
Pharmacy On Call 24/7
for people with bleeding disorders.
Ask about our
”EDUCATION IS POWER”
scholarship
...the Ultimate Factor.
No matter
where you are,
we are there
for you
www.medprorx.com • (888) 571-3100
Hemophilia Federation of America
Program Updates
HelpingHANDS
Hemophilia Federation Of America
assistance for persons with bleeding disorders
Candy Whirley will join the HFA 2008 Symposium
as a presenter of the Focus on the Feminine breakout
session entitled “Let Me Guess… Too Much Stress?”
Candy will bring the Symposium attendees on a roller
coaster ride with her high-energy, innovative training
activities and her contagious sense of humor.
Candy specializes in breaking down barriers so that
people will work better together, learn to deal with
change, improve communication, and become more
creative.
Her interactive style includes stories and
engaging activities that not only make learning fun, but
bring meaning to the topic and help the participants
retain and apply what they have learned.
Through speeches and workshops, Candy shares over
20+ years of expertise to help professionals from the
Hawaiian Islands to London, England improve their job
performance and achieve their personal goals. Currently
Candy serves as President of the Kansas City Chapter
of the National Speakers’
Association. She graduated
Cum Laude from Missouri
Western State College
with a B.S. in Speech
Communications,
with
a
Human
Relations
emphasis. Candy earned
a Masters in Management
from the University of
Phoenix. A former Kansas
City Chiefs Chiefette and
model for the Kansas City
Star magazine, Candy’s
performances are anything
but forgettable.
In 2007, the Helping Hands program in provided an
astonishing $60,000 of financial assistance to establish
rapid, noninvasive sources of relief in emergency
situations for persons who have been affected by
Hemophilia or von Willebrands. As of December 31,
2007, the committee recieved 167 applications, of
which 142 were approved and105 requests were from
first-time applicants.
Sheila Timura of Critical Care Systems, realizes first
hand the importance of the Healing Hands program.
Timura says, “It is such a relief just knowing that there is
help available… Without this available assistance, these
families would have struggled and possibly lost a battle.”
Funding is provided for basic utilities, rent, mortgage,
vehicle repairs or insurance and other emergency needs.
Unfortunately, due to the enormous financial burden
placed on families living with a bleeding disorder, this
is an important program that gives careful consideration
and timely help to those in need.
This year, applicants resided in 34 different states and
recieved average monthly funding of $5,150.00. Since
its inception in 1997, the Helping Hands Program has
provided assistance to 808 individuals/families within
the bleeding disorder community.
This program and the profound affect it has on those
who are awarded funding and assistance could not be
possible without the financial support of Wyeth.
For additional information about this program, please
contact the HFA (toll free) 800-230-9797.
5
Ask Jill Hemophilia Federation of America
Focus on the Feminine Q&As
Send questions to [email protected], re: FOFMQA
Dear Jill:
I use Humate-P® and am confused about some information I heard recently. I’ve always kept my Humate-P® in the
refrigerator, but my friend says Humate-P® doesn’t need refrigeration. Who’s right?
Michigan
Dear Michigan:
You are correct that Humate-P® used to require colder refrigerator-level temperatures for storage. However, the U.S. Food
and Drug Administration recently approved a change in Humate-P® storage conditions.
Humate-P® now can be safely stored for up to two years at 77 degrees Fahrenheit. This means you can store Humate-P® at
room temperature, as long as the temperature does not exceed 77 degrees.
You always can discuss product storage questions with your hematologist or Hemophilia Treatment Center.
Jill
Dear Jill:
Is it common to have to go to the hematologist when you have a bleed? It seems people with hemophilia dose
themselves.
Utah
Dear Utah:
Many individuals with bleeding disorders (or one of their family members) learn how to infuse. There are positive reasons to learn self-infusion. First, it frees the person and/or family to travel beyond the geographic area of their health care
provider. Second, by infusing at home or wherever one may be, charges for emergency room visits are avoided. Third,
the person with a bleeding disorder who self-treats may acquire a sense of well-being about their treatment and bleeding
disorder.
If you would like to find out more about self-infusion, discuss it with your health care provider. If you are a candidate for
self-infusion, a little training and practice will help you treat your bleeding episodes without a trip to the clinic or hospital.
Jill
Jill Williams
A woman with von Willebrand disease, Jill Williams works as a
vWD Specialist for Critical Care Systems. She is a long-time
advocate in the bleeding disorders community, and has authored
numerous national articles, pamphlets and booklets on the medical
and psychosocial issues of women with bleeding disorders.
Disclaimer
This material is provided for general information
only. The HFA does not give medical advice or
engage in the practice of medicine and recommends that you consult your physician or local
treatment center before beginning any form of
treatment.
© Hemophilia Federation of America 2008
6
The Latest in Industry News
Medical News
Bayer
HealthCare Enhances Data Collection of EZ-Log
Electronic Patient Diary: New Laser Scanning Technology
Makes Tracking Hemophilia Treatment Easier
BERKELEY, Calif. (Dec.13, 2007) – Bayer HealthCare today
announced the addition of new laser scanning technology to
its electronic patient diary system for hemophilia A patients.
Now equipped with laser scanners, the enhanced Kogenate® FS,
Antihemophilic Factor (Recombinant), EZ-Log Electronic Patient
Diary provides more consistent record-keeping of treatment for
both patients and healthcare professionals. For a copy of the article
in its entirety, please visit www.hemophiliafed.org, Industry News
Section (Information provided by Bayer HealthCare).
Wyeth’s BeneFix R2Kit Can Be Ideal for Travel
Wyeth’s new BeneFix Rapid Reconstitution (R2) Kit may help
take the hassle out of preparing factor, so persons with blood
clotting disorders can spend more time enjoying their trips. The
first and only recombinant factor for patients with Hemophilia
B, the BeneFix R2 Kit allow infusion with minimal fuss. The Kit
has features that make it ideal for travel such as: a 2000 IU vial-for
fewer vials, less packaging waste, and faster cleanup; needle-less
reconstitution-no risk of needlestick during reconstitution; and
prefilled 5 mL diluent syringe-the first prefilled syringe for factor
IX replacement eliminates an entire step during reconstitution. To
learn more about the new convenience enhancements of BeneFix, visit
www.benefix.com (Information provided by Wyeth LifeLines).
Travel Planning Tips for Symposium 2008
Whether by train, plane or automobile, it is important to come
prepared to make sure that you and your medication arrive safely
at your destination. When traveling by plane, it is important
to bring your medication on the plane with you, but the better
prepared you are the easier it will be for you to pass through
security.
The Transportation Security Administration (TSA)
provides some helpful tips to prepare for security screening. (1)
Allow extra time to go through security. (2) Medications must
be labeled so they are identifiable. (3) Medication and related
supplies are normally X-rayed. However, as a customer service,
TSA now allows you the option of requesting a visual inspection
of your medication and associated supplies. *You must request a
visual inspection before the screening process begins. Otherwise,
your medications and supplies will undergo X-ray inspection.
(3) The limit of one carry-on and one personal item does not
apply to medical supplies, equipment, mobility aids, or assistive
devices. (4) If you have documentation about your medical
condition, present it to the security officer. Although TSA does
not require this documentation, it may help you proceed through
the screening process. While driving, it is important to be sure that
your medication is stored at the appropriate temperature during
your travels. No matter how you plan to travel, you may want to
pack some additional medication in case your trip gets extended
for any reason. (Information provided by Wyeth LifeLines and the
Transportation Security Administration).
7
Annual Meeting and Symposium
The Peabody Hotel - Little Rock, Arkansas
May 2-3, 2008
SINGLE ADULT/FAMILY REGISTRATION FORM
To register: Registration Deadline - April 15, 2008
Mail: Hemophilia Federation of America 1405 W. Pinhook Rd., Ste. 101, Lafayette, LA 70503
Fax: (337) 261-1787 Questions? Call 1-800-230-9797 (Toll Free) or 337-261-9787
To register children 18 and under, complete a SEPARATE Child/Teen registration form for each child after you have completed THIS form. Feel free
to duplicate any form. Young adults (ages 18-21) living at home with parent(s) may be included as part of the family registration.
Section 1: Payment Information
Payment information must be received before we can process your registration.
Check the registration method: ____ $25 Individual ____ $50 Family (Parents & Children)
Payment Method:
____Check
____ Money Order ____ Credit Card
Credit Card Number_______________________________
Security Code _______ Expiration Date____________________
(Visa/MC on back, AMEX on front)
Name on Credit Card______________________________ Signature______________________________________________________
Other Payment Arrangements (Explain):_______________________________________________________________________________
Section 2: Information (please print neatly or type)
Your Information
Your Name: _________________________________________
(Last Name, First Name, MI)
Address: ____________________________________________
Your Spouse
Spouse Name: _______________________________________
Work Phone: (
) _____________________________
City: _____________________State:________ Zip: _________
Cell Phone:
) _____________________________
(Please list at least one contact phone number below.)
E-mail Address: _________________________________
Home Phone: (
) __________________________________
Work Phone: (
) __________________________________
Cell Phone:
) __________________________________
(
E-mail Address: ______________________________________
Relation to Hemophilia/Other Bleeding Disorder (Circle)
Factor VIII | Factor IX | other Factor _____
vonWillebrand’s | Family Member | Friend of Family
Carrier | Inhibitor | Other_____________
(
Relation to Hemophilia/Other Bleeding Disorder (Circle)
Factor VIII | Factor IX | other Factor _____
Carrier | Inhibitor | Other_____________
Breakout Session Choice for Saturday, May 3
You MUST choose one below
HFA Dads in Action ____
HFA Focus on the Feminine ____
HFA Blood Brotherhood Session ____
Breakout Session Choice for Saturday, May 3
You MUST choose one below
HFA Dads in Action ____
HFA Focus on the Feminine ____
HFA Blood Brotherhood Session ____
Do you authorize the use of photographs or videos for HFA use only? ____Yes ____No
Are you registering any children/teens? ___Yes ____No (If yes, please list below.) (You will need to complete a separate youth/young adult form for
each, and send all with this form.) Children/Teen: __________________________________________________________________________
_______________________________________________________________________________________________________________
(Name and date of birth for each child)
Scholarships for Symposium assistance are available- please refer to registation form on page 12 of this issue
8
May 2-3, 2008
CHILD/TEEN REGISTRATION FORM
**Note: There is NO on-site registration for the Child/Teen Program**
To register: Registration Deadline - April 15, 2008
Mail: Hemophilia Federation of America 1405 W. Pinhook Rd., Ste. 101, Lafayette, LA 70503
Fax: (337) 261-1787 Questions? Call 1-800-230-9797 (Toll Free) or 337-261-9787
This registration form is intended for children and teens living at home
with parent(s).
It must accompany an Adult Registration form.
Please complete a form for each child attending.
Indicate the type of registration below.
______ Child (infant- 5 years old)
______ Child (6-11years)
______ Teen (12 –18 years old) *** (Heifer Ranch 2-day off-site Camp will
require advanced registration. Complete camp packet is available at www.
hemophiliafed.org. Note--there is limited space available.)
- HFA USE ONLY -
Section 1: All Registrants (please print neatly or type)
Parents/ Legal Guardian ________________________________________________________________________________________
_________________________________________________________________
_____________________________________
Address City/State/Zip
Home Phone Number
Cell Phone_______________________________________ Pager_____________________________________________________
__________________
Child’s Last Name __________________
First Name
Child’s Relationship to Hemophilia:
____Factor VIII ___Factor IX ____vWD
______________
Nickname
______________________ ________
Date of Birth (required)
Age
____Carrier ___Family Member ___Inhibitor
___________
Male / Female
Other (explain) ________________
***Please be advised that some activities planned for Friday & Saturday, May 2-3 for both Children’s and Teen Programs may take place offsite.
Do you grant permission for the child in your care to go on a chaperoned fieldtrip? (Please circle your choice) YES
NO
Please list ALL medical conditions, and include ALL medications (including FACTOR), as well as any other information necessary to ensure
your child’s safety. ______________________________________________________________________________________________
____________________________________________________________________________________________________________
____________________________________________________________________________________________________________
***The undersigned parent/legal guardian hereby consents to their child, _______________________________________________, participating in the activities of the Hemophilia Federation of America’s HFA Kids/Teen Connection program at its Symposium 2008 event in Little Rock, AR.
The undersigned parent/legal guardian does hereby release, hold harmless and agree to indemnify, the Hemophilia Federation of America from any
and all liability resulting from the participation of said child in the activities sponsored and conducted by the Hemophilia Federation of America’s
Children’s/Teen’s Programs.
Parent/Legal Guardian Signature __________________________________________
Date____________________
Do you or your spouse have health/accident insurance? ___ YES ___NO
If yes, please supply the following:
Company Name_______________________________________________ Company phone number_________________________
Company Address______________________________________________________ Policy Number ________________________
Policy Holder ______________________________________________________________________________________________
Scholarships for Symposium assistance are available- please refer to registation form on page 12 of this issue
9
HFA Office News Hemophilia Federation of America
HFA Welcomes New Policy, Communications Staff
Kisa Carter, Policy
Director for the Hemophilia
Federation of American
WASHINGTON, District of
Columbia – Kisa Carter joins
the HFA this month as the
Public Policy Director in the
DC metropolitan area. Kisa is
a graduate of Baruch CollegeCity University of New York,
graduating with a Masters
in Public Administration
while completing a graduate
fellowship at the National
Organization for Rare Disorders (NORD). During
her tenure with NORD, she worked in the Public
Policy office in Washington DC representing over 25
million Americans with rare disorders on Capitol Hill.
Additionally she monitored crucial legislation and public
policies, collaborated with health advocacy organizations,
and represented NORD at meetings on Capitol Hill and
meetings at federal health related agencies. Prior to her
tenure with NORD, she administered the Medical Care
Cost Recovery program at the Veterans Affairs Medical
Center (VAMC) in Houston, Texas.
Preceding her employment with the VAMC, she served
in the United States Air Force completing an eight-year
enlistment and tours of duty in Texas, Germany, Japan
and Oklahoma. Kisa joins the HFA eager to continue
educating the public and advocating on behalf of the
hemophilia community.
Andree Gonsoulin,
Communications Director for
the Hemophilia Federation of
America
LAFAYETTE, Louisiana – HFA
welcomes new Communicatiosn
Director Andree Gonsoulin
who joined the staff in February.
Andree’s responsibilities include
the design and management of
Dateline Federation and other
publications and research of the
HFA, Educational Symposium
Program and identity development, public relations and
communication outreach. As you can see, she has worked
on redesigning and updating the Winter Issue of Dateline
Federation!
Andree joins HFA with a Master’s in Communication from
the University of Louisiana at Lafayette and a Bachelor’s
Degree in Graphic Design from Spring Hill College, in
Mobile, Alabama. Upon completion of coursework for her
Master’s degree, Andree joined Marmillion and Company, a
strategic public relations firm with offices in New Orleans,
California, Florida and Washington. Upon returning to
Lafayette about a year ago, Andree began serving clients
with diverse interests but a common need for strategic
communication coordination and planning.
Andree joins HFA part-time and looks forward to learning
more about bleeding disorders and is interested in getting
involved with the policy issues that affect members of the
HFA community. Andree’s goal for her work with the
HFA is to bring the publications to a higher level while
continuing to allow the HFA member organizations to
succeed in their missions.
Dan Bond, Blood Brotherhood Program Coordinator
GALVESTON, Texas - For more information on Dan Bond
and his role as Blood Brotherhood Program Coordinator please
refer to the article on page 4.
10
In Memoriam
Amy Lynn James leaves legacy of Hemophilia and Diabetes
Support. Amy Lynn James, 30-years-old, of Maumelle, Arkansas
died Sunday, October 28, 2007, at Hospice Home Care in Little
Rock after a lifelong battle with diabetes. A past President of the
Hemophilia Foundation of Arkansas, Inc. Amy was very active in
diabetes and hemophilia research.
Amy was the proud mother of two sons to whom she devoted
her life. Both Christian James and Jordan Baker were born with
hemophilia and required her constant care. She is survived by both
sons and a host of family and friends whose lives she touched.
Following a private memorial held in her memory, Amy’s body was
donated to medical research in an effort to find a cure for diabetes.
The family requests that, in lieu of flowers, gifts or memorial
contributions be sent to a trust fund set up for her children through
First Service Bank, P.O. Box 430, Greenbrier, AR 72058, (501)
679-7300.
Board of Directors extends condolences to family of Donna
Riling The Board of Directors and staff of the Hemophilia
Federation of America would also like to extend its condolences
to family and friends of Donna Riling, who passed away on
December 14, 2007. She was a past Associate Executive Director
serving on staff for the Tennessee Hemophilia & Bleeding
Disorders Foundation (THBDF) for 11 years until her retirement
six years ago. After Donna’s retirement, she continued to be an
active volunteer, advocate and friend for the community that she
so dearly loved.
Community News
Save One Life sponsors persons with bleeding disorders
Save
One Life is a 501(c)3 registered charitable organization who’s
vision is a sponsor for every person with a bleeding disorder who
lives in the developing world and needs aid. One who offers
compassion, friendship, direct financial support and a future filled
with hope. Just $240 annually provides food, vitamins, clothing or
an education a young person with a bleeding disorder who would
otherwise have to go without. To learn more about Save One Life
visit their website at: www.SaveOneLifeInc.org.
Educational Scholarship Makes Big Impact In a recent letter,
Molly M. Evers, a recipient of the 2007 Artistic Encouragement
News
Grant, expressed her sincere appreciation for the opportunities
afforded to her by the Scholarship provided by HFA. The following
is a excerpt from Molly’s letter:
Dear Hemophilia Federation of America,
...Not only have I learned a great deal about dance and performance,
I have also gained a great sense of accomplishment ... I have learned so
much and have been able to stay active in the process. Before I started
dancing I rarely exercised; I now feel healthier than I have felt in a
while- physically and emotionally. My friends and family have started
to notice a positive change in my attitude and outlook on life. My
personality has even changed for the better; I am more outgoing and
less shy than I had been previously... Everyone that I talk to about the
grant has been so supportive of my creative endeavor. I have inspired
a few of my friends to also take up dancing for fun and exercise... This
is especially true within the bleeding disorders community; it has most
certainly helped me.
Thank you HFA for making this possible.
Sincerely, Molly M. Evers
Your Shopping Searches and $$
Can Now Benefit HFA!
What if Hemophilia Federation of America earned
a penny every time you searched the Internet or
shopped online? Well, now we can!
Just go to www.goodsearch.com and be sure to
enter HFA as the charity you want to support. And,
be sure to spread the word!
www.goodsearch.com
11
May 2-3, 2008
SYMPOSIUM SCHOLARSHIP APPLICATION
For First Time Attendees - Deadline: April 1, 2008
Please Print:
Your Name: ___________________________________________________________________________________________________
Address: _____________________________________________________________________________________________________
(Address, City, State and Zip)
Home Phone: (
) __________________________________
Work Phone: (
Cell Phone:
) __________________________________
E-mail Address: ______________________________________
(
I am applying for an: (circle one) INDIVIDUAL
) __________________________________
FAMILY
Please list the names of each family member attending and ages of children under 18
____________________________________________________________________________________________________________
(Name of Family Member Attending, Sex, Age, Relation)
____________________________________________________________________________________________________________
____________________________________________________________________________________________________________
____________________________________________________________________________________________________________
____________________________________________________________________________________________________________
Please Circle the Type of Assistance Needed (circle one):
If you requested travel, please indicate (circle one): Departing City and Airport: Preferred Time of Departure: HOTEL or
TRAVEL
Air Automobile
Other ________________________
1st Choice ______________
2nd Choice ____________________
__________________________________________________________
Are you or your spouse employed by a Homecare Company or Manufacturer (circle one)? Yes No
If yes, please identify company: __________________________________________________________
Have you received a previous HFA Symposium Scholarship (circle one)?
Relationship to Bleeding Disorder (circle): Yes No
Factor VIII | Factor IX | other Factor ___________________________
Carrier | Inhibitor | Other_____________________________________
How did you find out about the HFA Educational Symposium? ___________________________________________________________
Completed registration forms and appropriate registration fee must be submitted with this scholarship application and returned to:
HFA, 1405 W. Pinhook Road Suite 101, Lafayette, LA 70503 or fax to 337-261-1787
NOTE: Scholarships are limited to funding availability.
Date Received: 12
HFA Use Only
Referred By: Date of Notification:
Scholarships
EXTENDED SCHOLARSHIP LISTING
The deadline for applying for 2008 HFA Educational Scholarships is April 30, 2008. You can obtain the requirements and forms necessary at www.hemophiliafed.org or by calling the HFA office at 800-230-9797. The
scholarships listed below are for your information and reference. HFA tries its best to ensure the information
presented is factual and current.
Name of Scholarship Sponsor Deadline Web Site Link
Beth Carew Memorial Scholarship
American Homecare Federation, Inc.
April 15
Bill McAdam Scholarship
Bill McAdam Scholarship Fund
May 15
BioRx/Hemophilia Educational BioRx/Hemophilia North Carolina
May 1
Charles Dawson Memorial Scholarship
Hemophilia Foundation of Gr. Florida
April 30
Christopher Mark Pitkin Scholarship
Hemophilia Foundation of S.California
August 15
CoaguLife Education Scholarship
CoaguLife
Multiple
Edu-Grants (for K-12 Assistance)
Novo Nordisk
Contact
Education is Power Scholarship
MedPro Rx, Inc. Spec. Pharm. Svcs.
Eric Delson Memorial Scholarship
Caremark, Inc.
Factor Fdn of America Scholarship Factor Foundation of America
May 1
July 1
April 20
Great Lakes Hemophilia Fdn Scholarship Great Lakes Hemophilia Foundation
Multiple
HemAspheres University Schol. Fund
American Red Cross
Deadline Past
HF of Michigan Academic Schol.
Hemophilia Foundation of Michigan
March
http://www.ahfinfo.com/ahfinfo/bc_mem_
scholarship.html
http://www.hfmich.org/programs/2006_information.html
http://www.biorx.net/hemo_scholarships.php
www.hemosocal.org/Pitkin_Application_Form.
pdf
http://www.louisianahemophilia.org/scholarships.htm
http://www.coagulife.com/4a-scholarships.html
http://www.novoseven-us.com/patient/sevenSecure_WhatIs.aspx#financial
http://www.medprorx.com/hemophilia_scholarship.php
http://www.nufactor.com/pages/eric_dostir.
html
http://www.glhf.org/scholar.htm
www.redcross.org/images/pdfs/hemaspheres%20scholarship%20fund.pdf www.hfmich.org/programs/scholarships.html
http://www.hemophiliahealth.com/consumers/
products_services/scholarship.htm
http://www.cohemo.org/scholarships.php
Hemophilia Health Services Mem. Schol. Hemophilia Health Services
May 1
Hemophilia Society of Colorado Schol.
Hemophilia Society of Colorado
May 1
HFMD Post-Secondary Scholarships
Hemophilia Fdn. of Minnesota/Dakotas
May 31, 2007
Wilson LA Hemophilia Fdn. Schol.
Louisiana Hemophilia Foundation
Contact
John Youssey Mem. Scholarship Fund
Hemophilia of Georgia
Contact
Lawrence Madeiros Mem. Scholarship
Positudes, Inc.
June 1
Michael Bendix Sutton Fdn. Scholarship
Michael Bendix Sutton Foundation
March 30
Hylton and Niederman Mem. Schols.
Factor Support Network
April 30
Mille Gonzalez Memorial Scholarship
Factor Support Network Pharmacy
April 30
www.factorsupport.com/scholarships/FSN_
MHRN_2007.pdf
http://www.factorsupport.com/scholarships.htm
New Horizons Scholarship Program
New Horizons
February 20
http://www.newhorizonscholarship.org/
Novo Nordisk EduGrants
Novo Nordisk
Open all year
Project Red Flag Acad. Schol.- Women
National Hemophilia Foundation
May 15
http://www.projectredflag.org/scholarship.htm
Rachel Warner Scholarship
The Committee of 10,000 (COTT)
May 1
www.cott1.org
Scott Tarbell Scholarship
May 1
SevenSECURE Grants
Novo Nordisk
Open all year
Soozie Courter Hemophilia Schol. Prog.
Wyeth Pharmaceuticals
April 15
Eric Dotsie Memorial College Schol.
NuFactor
March 1
HHS Memorial Scholarship Fund
Hemophilia Health Services (HHS)
May 1
Kevin Child Scholarship
National Hemophilia Foundation
June 27
Ula Hedner Scholarship
Novo Nordisk
April 30
Utah Hemophilia Fdn. Scholarship
Utha Hemophilia Foundation
Spring
www.novoseven-us.com/pdf/00668_novose_
ssM_edu_frm_fa.pdf
http://www.hemophiliavillage.com/programs_
scholar.asp
http://www.cwu.edu/~scholar/outside/ericdostiememorial.htm
http://www.hemophilia.org/NHFWeb/MainPgs/MainNHF.aspx?menuid=53&contentid=35
http://www.novoseven-us.com/patient/sevenSecure_WhatIs.aspx
http://www.hemophiliautah.org/resources/
* HFA makes every effort to present this information factually - please contact Dateline Federation
through the HFA office for corrections.
http://www.hfmd.org/Scholarships/Scholarship%20Form%202007.pdf
http://www.louisianahemophilia.org/scholarships.htm
http://www.hog.org/programs/scholarships.asp
http://www.adirondackspintacular.com/
pdf/2008%20Application.pdf
http://www.kelleycom.com/scholarships.html
13
Corporate Partners Hemophilia Federation of America
2007-2008 Honor Roll of Corporate Partners
The Hemophilia Federation of America would like to recognize and acknowledge those home care
providers and pharmaceutical manufacturers who have contributed financially towards the accomplishment of our mission.
Angel - $100,000 +
Diamond - $50,000 - $99,999
Platinum - $25,000 - $49,999
Gold - $10,000 - $24,999
Silver - $5,000 - $9,999
Bronze - $2,000 - $4,999
CoAg Therapeutics
Friend - Up to $1,999
The Coalition for Hemophilia B, Inc.
14
Date March 2008
March 1
March 1-2 March 5-7
March 5-7
March 5-7
March 7-9
March 8
March 8
March 8 March 14
March 14-15 March 15
March 15
March 22
March 22
March 26
March 30
March TBA Calendar of Events
Organization
Description
Hemophilia Foundation of No. Calif.
Sangre de Oro Hemo. Fdn of NE Mexico
Florida Hemophilia Association
Hemophilia Foundation of Illinois
Bleeding Disorders Assoc. of So. Tier Florida Hemophilia Association
Gateway Hemophilia Association Hemophilia Foundation of No. California
Tenn. Hemo. & Bleeding Disorders Fdn.
Hemophilia Foundation of So. California
Woman’s Outreach Network
Couple’s Retreat- Concord, NC
Washington Days
Washington Days
Washington Days
Victory Junction Gang Camp Family Weekend, Randlemann, NC
Spring Gala, Marriott O’Hare, Chicago, IL
BDAST Bowl-a-thon Fundraiser
Volley for a Cure Tennis Tournament, Pinecrest, FL
Adult Educ. Summit and the vWD Conference Homestead Resort
Family Information Day
National Hemophilia Awareness Month Trivia Night
WON (Central Valley)
Fishing for Fisher Bass Tournament
HFSC Board Meeting
Bloodrun (Motorcycle run) – Las Vegas
Teen Retreat
Hemophilia Foundation of No. California
Tri State Bleeding Disorder Foundation
Hemophilia Fdn of Minnesota/Dakotas
Tenn. Hemo. & Bleeding Disorders Fdn.
Hemophilia Assoc. of the Capital Area
Hemophilia Foundation of Illinois Hemophilia Foundation of So. California
United Virginia Chapter of NHF
UHF Teen Retreat at the Homestead Resort
17th Annual Dr. Terry J. Weiss Memorial Fundraiser
Consumer Information Meeting – Las Vegas
Region IX
2008 Regional IX Hemophilia Treatment Center Conference
HFMD Annual Meeting, Sheraton Minneapolis West, Minnetonka
Red/White Husker Game & Tailgate at Memorial Stadium
HFSC Conference Call Board Meeting
Spring event Location TBD
Music City Golf Classic Nashville, TN
HNC Annual Golf Tournament, Chapel Hill, NC
Couple’s –Retreat, Bavarian Inn, Shepherdstown,WV
Women’s Tea
Statewide Education & Fun Weekend, Utica, IL
Family Information Day
Tennis Tournament, Montclair Country Club, Dumfries, VA
Wine Tasting Fundraiser
Outreach Southern NM
April 2008
April 2-5
April 5
April 5
April 5
April 13-14
April 13 -14
April 18-20
April 19
April 23
April 23
April 24
April 25
April 25-27
April 26
April 26-27
April 26
April TBA
April TBA
April TBA
May 2008
May 1-3
May 2-4
May 2-3
May 9
May 12
May 13-14 May 19
May 19-20 May 21
May 23-25
May 28
May 31
**HFA 2008 Educational Sympositum - May 1-4**
Northern Ohio Hemophilia Foundation
United Virginia Chapter of NHF
Hemophilia of North Carolina HNC
Bi-Regional VII &X Meeting, Idaho
Parents Empowering Parents
UHF Teen Retreat at the Homestead Resort
The 3rd Annual Benefit, “The Black & Blue Ball”
Golf Tournament, Heritage Hunt Golf & Country Club
JC/AC Training
Camp Meeting
Future Leaders Day
Legislative Day
Family Weekend, Charlottesville, VA
HFSC Board Meeting
Annual Meeting, Winston-Salem, NC
HFA member organizations are encouraged to post announcements and events by emailing the information to [email protected].
15
BECOME A MEMBER OF THE
HEMOPHILIA FEDERATION OF AMERICA
IN ONE OF THE FOLLOWING WAYS:
Visit our web site at www.hemophiliafed.org, use Paypal to send a payment
or
Complete the information below and mail to the address listed below.
I would like to become a partner of the Hemophilia
Federation of America. Please accept my donation in
the following category.
Corporate Angel Partner ($100,000)
Corporate Diamond Partner ($50,000)
Corporate Platinum Partner ($25,000)
Corporate Gold ($10,000)
Corporate Silver ($5,000)
Corporate Bronze ($2,000)
Corporate Friend (below $2,000)
Chapters ($750)
Individual Diamond ($1,000)
Individual Platinum ($500)
Individual Gold ($100)
Individual Silver ($50)
Individual Bronze ($25)
________________________________________________
Name
________________________________________________
Company
________________________________________________
Address
________________________________________________
City State Zip
________________________________________________
Phone Fax
________________________________________________
E-mail Address
________________________________________________
Work Phone/ Work Fax
Please make check payable to: Hemophilia Federation of America.
1405 W. Pinhook Rd., Suite 101
Lafayette, LA 70503
NON PROFIT ORG
US POSTAGE PAID
LAFAYETTE, LA
Permit No. 735

Article on Page 2 - Hemophilia Federation of America

Transcription

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