Facts N' Factors e-Newsletter | May 2015

Be Brave! Bravelets - A New Way to Show Your Support for the Bleeding VHF Disorders Community

Kelly B. Cartwright | VHF Member

 

Friday, April 17th was World Hemophilia Day, and my Facebook feed was filled with photos of sons and daughters, boys and girls, and men and women whose lives are affected by bleeding disorders. I saw an amazing photo of a younger brother (about 6 years old) infusing an older brother. I saw pictures of loved ones who are no longer with us. One individual expressed sadness that folks seemed to be celebrating such a difficult condition that has brought so much pain to so many families. But, one mother eloquently shared that she posted her son's picture not because she was celebrating his condition but because she was so, incredibly proud of how he handled daily life with severe hemophilia. She shared that he is her hemo hero and that his bravery inspires her daily.  

 

Go HERE to read more.


VHF has teamed up with Bravelets to create an opportunity for all of us to wear reminders of our bravery. Bravelets are beautiful bracelets inscribed with the words "be brave". A full $10 from the purchase of each Bravelet goes directly to VHF to support programs and services for individuals with bleeding disorders and their families.  

 

 


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Get Involved

 

Annual Educational Meeting | Saturday, June 20, 2015 VHF Annual Meeting Collage

 

Registration and breakfast begin at 7:45 am and the meeting will conclude by 5:00 pm

Hilton Garden Inn Suffolk Riverfront | 100 East Constance Road Suffolk, VA 23434  

 

Join us for a day of educational programs and community building!

 

Some of the highlights include:

  • Talks on The HERO Study, Advance Therapies for Bleeding Disorders, and Step it Up! Being More Active With Hemophilia
  • Break-out Sessions: HFA Dads in Action Rap Session, Work Life Balance for Women, Behind the Scenes with Fair CoPay VA
  • Exhibits by our Generous Sponsors
  • Annual Membership Meeting and Lyman Fisher Scholarship Recognition
  • Selection of VHF's Junior National Championship Representatives
  • A Chance to Win a Trip to NHF's 2015 Annual Meeting in Dallas, TX
  • Children and Teen Programming at YMCA Camp Arrowhead
  • On-site Childcare for Those 4 and Under

Extra fun-be sure not to miss:

Dinner just for VHF members and their families on Friday, June 19th at 6:00 pm at the Hilton Garden Inn. Then join us for the TGIF concert series at the hotel's waterfront park!

Hotel accommodations are available Friday, June 19th at the Hilton Garden Inn.

 

Go HERE to RSVP  (Members)  (Industry)

 

Upcoming Events May and June - Come Join Us!

 

May 21 - Educational Dinner "Dental Care" Harrisonburg  RSVP 

June 4 - Women's Night Out "Paint Nite Event" Virginia Beach RSVP 

June 13 - Family Fun Day at the Virginia Safari Park Natural Bridge RSVP 

June 19-20 - Annual Meeting Suffolk Member RSVP   Industry RSVP 


Submit Your Application for HeroPath™ Today!   

*All entries must be received by 11:59 p.m. EDT on Monday, June 15, 2015.

HeroPath 2014  

 

Navigating adulthood is challenging enough-from asserting your independence, to building relationships, to choosing a direction in life. Living with hemophilia can make this life stage even more complex, which is where HeroPath™ comes in. Apply to HeroPath™ today for the chance to work with talented life coaches and your peers to learn new skills and techniques to help you excel in your daily life and chart a clear path forward.

 

What: For the second year in a row, Novo Nordisk has partnered with Jeffrey Leiken, Chief Executive Officer at Evolution Mentoring International, to offer HeroPath™, an empowering program that offers life coach and peer support to help teens ages 16-19 and adults ages 20-25.  

 

Who: Given the hemophilia community's positive feedback from HeroPath™ 2014, Novo Nordisk has expanded the program so that all people with hemophilia A or B (with or without inhibitors) ages 16-25 who live in the United States and are privately insured may apply.

 

How: Visit the  HeroPath website to complete your official HeroPath™ application, which requires answering several multiple-choice questions and providing a short written explanation (up to 150 words) of why you are a great fit for the program. Not one for writing? You can provide a 60-second video explanation instead-just upload your video to YouTube™ and paste the URL into the application form. Check out the website for sample responses to help get your creative juices flowing.

 

Go HERE to read more.

Go HERE to visit the HeroPath website.

 

 
Event Wrap-up
Advocacy Educational Dinner

 

Advocacy Educational Dinner

Becky Bowers-Lanier | VHF Advocacy Consultant

 

On Thursday, April 16th, Jill Hanken spoke to VHF members and guests about access to health care through the Affordable Care Act and about Medicaid expansion or closing the coverage gap. Jill is a Senior Staff Attorney for the Virginia Poverty Law Center and an acknowledged expert on Medicaid. We met at Southerly's, the new restaurant adjacent to Southern Season in Richmond. The food and company were excellent.

Jill's presentation consisted of a review of the implementation of the Affordable Care Act (ACA) in Virginia, including work that remains to be done to provide health care coverage to the uninsured.

 

Go HERE to read more.
Teen Retreat

2015 Teen Retreat - A Recipe for Fun

Megan Shifflett | Educational Consultant Pediatric Hematology Oncology Clinic Pediatric Renal Clinic UVA Health System

 

14 parts teenagers

3 parts young adult leaders (thanks Curtis, Greta, and Lamont!)

3 sunny, warm days

1 fun, funky t-shirt

Mix in traditional camp activities like camp fires, canoeing, and a climbing wall

Bake with little sleep, lots of energy, and long lasting friendships

Pull out an Amazing Teen Retreat

 

The Third Annual Teen Retreat at Camp Holiday Trails (April 17-19) was full of sun, fun, and energy.  Joe Torrey from GutMonkey traveled all the way from Oregon to share their Leading Edge Program.

 

Go HERE to read more.
VHF/HFA D.I.A. Program

Dads in Action Event at Massanutten Waterpark

Kelly Waters | VHF Executive Director

 

On Saturday, April 25th over 50 participants headed west to Massanutten Resort Waterpark for the Hemophilia Federation of America's (HFA) Dads in Action (DIA) Family Event. Phil and Ryan Harty made an encore appearance (having participated in our DIA program in March 2014). Their presentation was once again a fun and inspiring story about the importance of listening to your body, that it is OK to ask questions, being determined, and the value of setting goals. Asking questions about self-infusion and fitting in with friends was a highlight of the program. After the educational presentation and lunch we all headed to Massanutten's indoor waterpark to swim and hang out with new and old friends.

 

Go HERE to read more.
 
HTC News
UVA Lunch Lecture

 

UVA Lunch Lecture

Leah Willey, LCSW | Pediatric Social Worker Dept. of Hematology/Oncology UVA Children's Hospital

 

UVA's Pediatric Hematology Treatment Center hosted their 3rd lunch lecture during their March 31st Comprehensive Clinic. The session for the parents was co- facilitated by Margy Sennett, NP and Dr. Collen Druzgal who outlined the additional challenges of parenting a child with a bleeding disorder. To this end, they offered their suggestions on how to best support their children throughout their development.  

 

 

Congratulations Gita V. Massey, MD!   

 

Dr. Massey (Pediatric Medical Director for Central Virginia Center for Coagulation Disorders, VCU Health Systems) is listed in the April 2015 issue of Richmond Magazine as a TOP DOC 2015 winner in Pediatric Hematology/Oncology (and a top vote-getter in that category). 


 




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Community News

HFA Symposium

HFA Virginia Represent!

Zack Bordone | VHF Board Member

 

The Hemophilia Federation of America's (HFA) mission is to strengthen community support and awareness, develop effective local organizations, and implement valuable community-based programs. HFA has empowered and protected the bleeding disorder community since 1994.

 

I act as a delegate/conduit for VHF and represent VHF on the HFA board. Through discussion and understanding, we share exciting success stories with each other so we may all become strong chapters.  

 

  Go HERE to read more.
HFA Symposium

HFA Symposium - A Grandmother's Perspective

Debbie Baugher | VHF Member

 

I had the opportunity to attend this year's Hemophilia Federation of America (HFA) Symposium in St. Louis. The outpouring of caring and sense of family within the hemophilia community was obvious. I'm new to the world of bleeding disorders....my grandson who was born in 2014, has a severe Factor VIII deficiency so it is important to me to learn all I can. One thing that really touched me was the special session just for mothers (they let us grandmothers attend, too!) We heard from a mother who through her tears, expressed feelings of being alone in this journey because she could find no other families in her area. Immediately, mothers who were in her state reached out to her...getting emails and phone numbers so they could put her in touch with resources. More importantly, there was a mother sitting next to her that reached over and gave her that all important hug...knowing someone understands your pain is sometimes all that's needed.

 

Go HERE to read more.
Factor 7 Retreat
 

 

CHES (Comprehensive Health Education Services) and the LadyBugs Foundation teamed up in 2012 to present the only national program of its kind for those affected by FVII.  Join them for a weekend of education, support, and fun for those affected by FVII deficiency and their families.

 

 

June 5 - 7, 2015 in Nashville, TN

 

Go HERE for more info. 

NHF Inhibitor Education Summits

 

NHF Inhibitor Education Summits - Join this dynamic event and interact with expert healthcare professionals as well as other patients and their families for a weekend of education designed to improve your overall health and quality of life.

The summits provide:

  • Travel and lodging assistance provided for eligible patients and their caregiver(s)
  • Both locations accessible to wheelchairs and other mobility devices
  • Four different educational tracks tailored to suit your needs as a patient or caregiver
  • An Interactive Education Camp for Youths, including an off-site activity (Ages 4-12)
  • Childcare for infants-3 years old

July 9, 2015 to July 12, 2015  Denver, Co  and July 16, 2015 to July 19, 2015 Atlanta, GA  


  Go HERE for more info.



 
Upcoming Events

August

September

  • September 16 - 17 - Amazing Raise Online Fundraiser
  • September 16 - Educational Dinner (Richmond)
  • September 19 - Family Overnight at Great Wolf Lodge (Williamsburg)

October

  • October 3 - 4 - Adult Retreat (Virginia Beach)
  • October 15 - Educational Dinner (Tidewater Region)
  • October 24 - HACA National Hemophilia Walk (Washington, DC)
  • October 31 - Halloween 5K Fundraiser (Richmond)

November

  • November 14 - Educational Lunch and Family Fun Event (Hampton)
  • November 17 -Women's Night Out (Richmond)

December

  • December 8 - Educational Dinner and Garden Fest of Lights (Richmond)
  • December 12 - Holiday Parties (Charlottesville, Richmond, and Norfolk)



757-705-1332

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