Facts N' Factors e-Newsletter
APRIL 2015

 

Building a Family of Support   

 

From the World Federation of Hemophilia Website: 

Join World Federation of Hemophilia on April 17 to raise awareness about bleeding disorders and the need to build a family of support for those living with them.  

 

 World Hemophilia Day provides an opportunity to talk to your extended family and friends, colleagues, and caregivers to raise awareness and increase support for those living with an inherited bleeding disorder.

 

You can also go one step further and have a local landmark, a light in your home or office, or your front porch light lit in red on April 17 to show your commitment to the bleeding disorder community.

 

This year connect the global bleeding disorder family on the World Federation of Hemophilia social media network and encourage your online community to join the global family.

 

Click here to access the available resources to support your World Hemophilia Day activities.  

 

 
Get Involved

Wine Tasting and Silent Auction
 

Sunday, May 3rd 3:00 pm 

 

 C'est Le Vin Wine Bar 

15 N. 17th St., Richmond, VA 23219

 

 $40 per person | $75 per couple  

 

Come savor a tasting of flavorful wines expertly paired with hors d'oeuvres by C'est Le Vin Restaurant and Wine Bar. Live music by Church Hill Music Co. and you will not want to miss our popular raffle and silent auction. Go HERE to RSVP. 

 
VHF Events for APRIL and MAY - Register Today!

 

April 16 - Advocacy Educational Dinner  RSVP  (Richmond)

April 17 - WORLD HEMOPHILIA DAY 

April 17 - 19 - Teen Retreat at Camp Holiday Trails  RSVP  (Charlottesville)

April 25 - HFA Dads in Action Family Event  RSVP  (Massanutten Water Park)

April  30 - Camp Youngblood at Camp Holiday Trails Application Due   (Camp Flyer) 

 

May 1  - Lyman Fisher Application Due 

May 1 - Travel Scholarship to Attend NHF is Due 

May 3 - Wine Tasting Fundraiser at C'est Le Vin  RSVP  (Richmond)

May 9 - Terry Lamb Batter Up Event  RSVP  (Norfolk)

May 15 - 17 - Family Weekend at Camp Holiday Trails  RSVP  (Charlottesville)

May 21 - Educational Dinner  RSVP  (Harrisonburg) 

 



 
Donor Thank You!

Thank You!

 

Listed below are individuals and organizations who have made a financial contribution from January 1, 2015 to March 31, 2015. The Virginia Hemophilia Foundation is so grateful to you all.

 

If we inadvertently omitted or misspelled your name, please accept our most sincere apologies.

INDIVIDUALS

Alluisi, Mary Jean

Anonymous

Barker, Ben

Bickley, Michelle

Bordone, Donna

Bordone, Zack

Bridges, Jeff

Cady, Nick

Dean, Kendall

DeShields, Denise

Deverick, JH

Diego, Laura

Duesing, Larry

Ebert, Reid

Eiden, Monika

George, Eric

Griffing, Sharon

Houston, Lee

Hubbert, David

Johnson, Murai

Johnson, Rhonda

Kasubick, Katie

Krecek Family

Kuhn, Jan

Larson, Michael

Lawson, Megan

 

Leftwich, Beth 

Lovelace, Orson

Midura, Megan

Midura, William & Barbara

Moore, Andrea

Moorehead, Shirley

Mortimer, Kathy

O'Connor, Kevin & Dorothy

Parnell, Jean

Prudencio, Maritess

Prudencio, Robin Cruz

Rivera, Jessica

Rust, Kelly

Seal, Colin

Shoff, Jack

Smith, Peggy

Songer, Judy

Stone, Terry

Taylor, Melissa

Vaughan, Allison

Verb, Kathleen

Warren, Daniel

Wheatley, Barbara

White, Gene

Welshonce, Michael

Young, Allen and Barbara

 

 

 

ORGANIZATIONS

AHF, Inc.

Baxter International Inc.

Bayer HealthCare

Biogen Idec Hemophilia

CHEP Charitable Foundation, Inc.

Community Health Charities of Virginia

CSL Behring

CVS Caremark Rx/Specialty Pharmacy

Emergent BioSolutions

HPC Specialty Pharmacy

Kedrion

Matrix Health Group

MedPro Rx, Inc.

Novo Nordisk

Patient Services, Inc.

Pfizer

Superior Biologics

United Way of Hopewell-Prince George

United Way - South Hampton Roads

Walgreens Infusion Services

 

 
Community News

Beards for Bleeders

Michelle Stielper| HACA and VHF Member 

 

Sometimes having a bleeding disorder can get a little hairy, but in this case that's a good thing. Our family became aware of the group of "growers" as they call themselves, through a hemophilia group on Facebook. Beards for Bleeders was created by John Bruno a fellow member in our community from Massachusetts. Their goal was to raise money and awareness for the bleeding disorders community by growing out their facial hair and posting their progress online. So my husband Nick who happens to work outside in an airplane hanger, (and tends to grow some excess facial hair in the winter months anyway) decided that he could warm his face and hopefully the hearts of others at the same time.  

 

For those of you who may not know us personally we are a factor 9 family. Our son Mason (age 2) has severe Hemophilia B, I have mild Hemophilia B, and my younger brother Matt is also a severe B. So needless to say an opportunity to potentially raise money and awareness for the bleeding disorders community, by doing something as simple as growing a beard, seemed like the perfect outlet for Nick to show his support. So he and numerous others set out to grow their whiskers for 6 months to a year, and do their part to create awareness in a rather creative way. What a simple way to make a difference.

 

Every week for 6 months Nick posted a picture of his ever growing beard to a Facebook group page so that people could literally watch his face disappear. He grew quite a beard and I think for awhile there we all started to forget what his face looked like. They also have a website, and "grew" quickly in popularity gaining lots of new "growers" along the way. It went from a national thing, to an international thing practically overnight with growers in countries around the world. You can check out their web page here (www.beardsforbleeders.org) and watch the progress of those that are in for the long haul. A years worth of whiskers; those guys are getting pretty hairy!

 

In joining Nicks main goal for "growing" was not only awareness but to also hopefully raise some money to give back to our local chapters. They do so much for all of us, and we are so grateful to have them as pillars of support within our community. In total Nick raised $1,000.00 which we split between our two local chapters, HACA and VHF, as we participate in both. We will never be able to give back in a monetary amount the amount of love, support and hope that our chapters give to us. However we are so glad to have been able to show them in some way how much they mean to us. "Raising Money and Awareness for Bleeding Disorders one Whisker at a time."

 

 

 

Terry Lamb Enrichment Scholarship
Lamont Banks | VHF Member

I'm Lamont Banks, a hemophilia patient living in Richmond, Virginia and the first recipient of the Terry Lamb Enrichment Scholarship. I applied for the scholarship to help pay for driving lessons because, having just gotten my computer science degree from Virginia Tech, I couldn't take advantage of any of the opportunities that came my way.

During the summer after graduation, I searched for relevant jobs in the city which were also accessible using public transportation. However, virtually every job I found was located in the surrounding area, out of reach of the bus line. And I had to turn down countless job recruiters, forced to admit that I could not responsibly accept any of their interview offers because I couldn't get to their offices. During this search, I'd taken a temporary job working night shifts at a nearby, bus-line accessible grocery store, hoping to bring a little bit income, save enough money to pay for driving lessons, and avoid burdening my family with having to teach to me drive.

However, months later, I was still searching for a career within the city, but it seemed everything I could find was just too far away. And I wasn't making nearly enough working at the store to pay for driving lessons. Additionally, the work was atrophying my computer skills and negatively affecting my health.

The hemophilia clinic at MCV recommended I apply for the Terry Lamb scholarship funded by VHF. Around the same time I applied, I also took a leap and accepted a software-related job working at a reputable company far outside the city. My family sacrificed their time and resources to not only make sure I could get to work, but also gave me driving lessons on the weekend. About a month after starting the job, I was notified that I'd been chosen for the scholarship, and immediately scheduled 10 lessons with a driving instructor.

After the first driving lesson, the instructor assessed that I only needed 2 lessons, not 10. A few weekends later, I passed my road skills exam and got my license. Shortly thereafter, a relative gifted me their old car, I got car insurance, and finally, I could begin driving. Now, I can commute to work, I can easily pick-up prescriptions and groceries, I can get to the bank, and so much more. For this, I say thank you to my family for their commitment, and to the Virginia Hemophilia Foundation for both their financial support and encouragement. Because of the Terry Lamb Enrichment Scholarship, I'm better able to take on the responsibilities of a young adult, and become a reliable resources for my local hemophilia community.

 
Event Wrap-up

Bowling for Bleeding Disorders Bowl-a-thon 

Terry Stone | HACA and VHF Member 

 

It's one of America's favorite past times! There is nothing like the thrill of the quiet calm of concentration as bowlers begin their walk down the lane as they release their ball with that perfect spin. Now hold your pose and marvel at the roar of the ball traveling at warp speed to crush those pins and show them who's the king pin! Wait for it, wait for it! STRIKE! Bowling is a seriously fun sport, and on March 7th, the King Pin at the AMF Bowling Lanes in Richmond was the Virginia Hemophilia Foundation as they welcomed 80 bowlers to the 3rd annual Bowling for Bleeding Disorders Bowl-a-thon.

 

Sixteen teams comprised of community members, family and friends came together to help raise much needed funds that will send kids to Camp Holiday Trails. Attendees were treated to pizza, sodas, desserts, t-shirts, and the chance to win door prizes generously donated by several sponsors. The event continues to grow in popularity and the team names are getting even more creative. Several teams did an exceptional job with getting donations towards their team efforts on the lanes! First place goes to Team Bing Dynasty/Cady who raised an additional $550! Second place was Team Green/Bordone who brought in an additional $450. Third place was the Luckazs/Eiden team with $245, and fourth place goes to our bowling birthday girl and CHKD Social Worker herself, Team Megan Midura, who raised $200.

 

Such a successful fund raising event needs a dedicated team of helpful hands to make it happen. Many thanks to our committee members and volunteers: Andrea Moore, Ben Barker, Donna Bordone, Jean Parnell, Megan Midura, Monika Eiden, Nick Cady, Nicole Bailey, Stacey Noble, Zack Bordone, Mike Welshonce, Megan Lawson, Ella Mortimer, and Prima Conner-Creatore . Many thanks to the generous industry partners who sponsored this event and came to show support. Go HERE to see our sponsors. This year's Bowling for Bleeders event was our highest grossing bowl-a-thon yet raising over $36,000, and that will buy a whole lot of fun for the kids this summer. Camp...here they come! Go HERE to see more photos from the event. 

 

 

Educational Dinner - Roanoke
Davida Wickline | VHF Member and Southwest VA Representative
 


 

The March 12th dinner and speaker were excellent. She educated us on The HERO Study which stands for Hemophilia, Experiences, Results, and Opportunities. This study surveyed people with hemophilia and caregivers concerning the support they receive from friends, family and others. In general most were satisfied with the support they received. The families attending seemed to agree with the survey results, although all of us have had rough experiences from time to time. In general most feel that hemophilia brings families closer together especially when unexpected events occur. We also talked about the fact that most children with hemophilia wish to play high-risk sports such as football and ice hockey. Booklets were handed out that suggested alternatives to these sports using parts of those high-risk sports sports. We also touched a little on IEP and 504 plans. All in all it was a successful dinner event, just wish more families could have attended to receive this useful information. Thank you to our educational dinner sponsor Novo Nordisk. 

 

Please join us for our next Educational Dinner on April 16th in Richmond.  Go HERE for more information.  

 

HFA Blood Brotherhood Event - Richmond

 

Eric George | VHF President, Board of Directors 

 

On the evening of March 14th VHF hosted our first Blood Brotherhood event. We began the evening like we begin every hemophilia men's event: we talked about bad joints and medic alert bracelets. Once we had the important topics taken care of we moved onto discussing the future of VHF and what we could do to strengthen and grow the organization. I was excited to be in the room that night. Hearing the brilliant ideas these men were proposing has me eager to meet with the Board of Directors later this month. 

 

From the Omni we boarded the Richmond Trolley and for the next 3 hours we were whisked through the streets of Richmond to visit 3 of Richmond's finest breweries. It may be a cliche, but men enjoy having discussions over a beer. Whether it was politics, rock music or how much cash the federal reserve has on hand, everyone was enjoying themselves sampling the best the breweries had to offer. As our night was coming to a close the general feeling was that we need to do more events like this.

 

We thank HFA for sponsoring this Blood Brotherhood event and we look forward to partnering with them again. Go HERE to see more photos from this event. 

 

First Step Picnic - Richmond
Lauren Dunn | VCU HTC Social Worker

Six families attended the VHF First Step program on March 21st. First Step is a program developed by the National Hemophilia Foundation to provide peer support for families with children recently diagnosed with a bleeding disorder. Families from throughout Virginia gathered at the Children's Museum of Richmond and started the day with a group luncheon. The children were then able to explore the museum with chapter volunteers while the parents met in a small group session. Tahnee Causey, the genetic counselor at the VCU HTC and I helped to facilitate the group discussion. Families were able to share their personal experiences of managing a bleeding disorder and shared tips and support to one another. Topics ranged from sports and exercise, pain management, new products, and the future role of genetics in management and treatment. After the breakout session, parents and children were able to spend the rest of the afternoon at the museum.
   
Thanks to everyone for joining us for this event and to the chapter for continuing to offer this important programming for new families. We'd also like to give a special thanks to all the volunteers who helped with childcare throughout the event - Melissa Rivera, Jessica Rivera, and James Johnson. Go HERE to see more photos from this event.

 


Go HERE for more information

 
Advocacy

Help Shape the Future of Advocacy

There is no better way to get accurate data than to go directly to the source of the data - you, the patient or family member. So the National Hemophilia Foundation has created a short survey to help them gain more insight into how our community obtains their healthcare coverage. The information you provide will help them understand where problems may arise with access (e.g. your HTC is not in a plan's network) or affordability (e.g. your monthly premium costs increased significantly from 2014 to 2015 or your bleeding disorders medication is included on your plan's specialty drug tier). Knowing where issues continue to exist for the bleeding disorders community will help them work to address them. Your responses to this survey are anonymous - they do not collect names, birthdates, addresses, phone numbers, e-mail addresses or other identifying information. 

Go HERE to take the survey

 
  News

Gene Therapy Study in Dogs Shows Markedly Lower Bleeding Rates

 

In a recently published paper, an international team of researchers report effectively administering gene therapy to three dogs with hemophilia B in an ongoing study. The report, "Liver-Directed Lentiviral Gene Therapy in a Dog Model of Hemophilia B," was published March 4, 2015, in the journal Science Translational Medicine. The lead author of the paper was Luigi Naldini, MD, PhD, director of the San Raffaele Telethon Institute for Gene Therapy at the San Raffaele Scientific Institute in Milan, Italy.

 

The three dogs in the study were administered the gene therapy either through direct injection into the liver, a primary source of clotting factor protein production, or intravenously. The therapy was housed in repurposed retroviruses called lentiviral vectors. These vectors act as vehicles, carrying customized genetic material to elicit the production of factor IX (FIX). One

advantage in using lentiviruses is that a majority of patients do not generate antibodies to this type of vector, avoiding an immune response that would otherwise render the treatment ineffective. Another benefit of using lentiviral vectors is their large size, enabling them to deliver greater concentrations of the FIX gene, resulting in a more optimal therapeutic effect. Go HERE to read more.

 

Source: ScienceDaily, March 12, 2015

 



 
Scholarships

NHF 67th Annual Meeting, August 13-15, 2015, in Dallas, Texas

 

The National Hemophilia Foundation registration for its 67th Annual Meeting, August 13-15, 2015, in Dallas, Texas, is now open. This annual conference draws together the entire US bleeding disorders community. It is the place to find out the latest information on research and treatment breakthroughs, educational programs, and insurance and advocacy initiatives.   Go HERE for more information.

  

NHF Travel Scholarship  

To provide a more inclusive Annual Meeting, NHF offers a limited number of Connections for Learning Grants to individuals and/or families with bleeding disorders who wish to attend the Annual Meeting for the first time, and returning families who have not attended NHF's Annual Meeting for the past three years. NHF would especially like to provide assistance to those unable to attend due to personal obstacles or other barriers. Awards will be based on these factors, and on need. Go HERE for more information. 

 

Anna DeSimone Grant
NHF is also offering the Anna DeSimone Grant for women who want to attend its 67th Annual Meeting. Any woman with a bleeding disorder who wishes to attend the Annual Meeting can apply for the grant. NHF would especially like to provide assistance to a woman who is unable to attend due to personal obstacles or other barriers. Go HERE for more information.

 

VHF Travel Scholarship  

If you are interested in attending, but need financial help to do so then check out VHF's educational scholarship to attend a national meeting. The deadline to apply is May 1, 2015. Go HERE for more information. 

 

VHF Lyman Fisher Scholarship
 
  Deserving members of the VHF bleeding disorder community and their families are eligible for a $2000 annual scholarship for secondary or higher education. Two $2000 scholarships are available. Applicants must have prior participation with the chapter and be a resident of Virginia or planning to attend school in Virginia. Deadline is May 1st.

Go HERE for VHF Scholarship Application 2015

 

HFA Educational Scholarships  

 

Each year, HFA awards scholarships to promising students in the bleeding disorders community. They are offering 4 scholarships for an increased amount of $2,000-$4,000 in three categories, Educational, Parent/Child/Sibling Educational, and Medical/Healthcare Services. Deadline is April 30th. Go HERE for more information. 

 

For other scholarships offered in the bleeding disorders community check out these websites:

 757-705-1332
www.drugcopharmacy.com


 
Upcoming Events



 

Virginia Hemophilia Foundation | P.O. Box 188 | Midlothian, VA 23113
804-740-8643 | www.vahemophilia.org