Facts N' Factors e-Newsletter | August 2015
New Office for VHF!  

On July 1st VHF moved its operations into a new office space - 410 N. Ridge Road, Suite 215, Richmond, VA 23229. At the 2013 Board Retreat and Strategic Planning Sessions, the VHF Board of Directors affirmed the strength of the organization, the commitment to the bleeding disorders community, and the next step in growth and development, which included having a physical location that better enables collaboration among staff and increases professionalism. The office has plenty of room for a new intern and volunteers, which will help us improve our existing services and programs! Thanks to a grant from the National Hemophilia Foundation and The Hemophilia Alliance Foundation many of the initial start-up costs have been covered. We are truly enjoying the space and can't wait for you to see it! Be sure to be on the lookout for an invite to our office open house this fall.



 
Get Involved

Upcoming VHF Events

 

 

August 6 - Educational Dinner Winchester RSVP   

August 13 - 15 - NHF Annual Meeting Dallas, TX 

August  22 - CEO Program for Teens  Virginia Beach  RSVP - Registration will close August 7th 

August 23 - Celebrating Summer Event  Virginia Beach  RSVP - Only a few spots left! 

 

September 10 - Educational Dinner Fredericksburg RSVP 

September 16 - Educational Dinner Richmond RSVP 

September 19 - Family Overnight at Great Wolf Lodge Williamsburg - Event is full 

 

Upcoming VHF Fundraisers - Save the Date! 



VHF will be participating in the Amazing Raise again this year - won't you join us? 

The Amazing Raise is a 36-hour online giving challenge that inspires and empowers supporters of Central Virginia nonprofit organizations in an amazing way, regardless of where you call home. Also when you give during The Amazing Raise, you can help us win additional incentive prizes ranging from $500 to $15,000! The excitement starts Wednesday, September 16th at 6:00 AM. Save the date and help us spread the word!

 

 

Want to make your Halloween extra SPOOKtacular?  

Join VHF  for a race the entire family can enjoy!  

Costumes are highly encouraged and treats will be given along the way!

 

Saturday, October 31  | 9:30 am

Robious Landing Park | Midlothian, VA 

5K - $30 | Kids Monster Dash - Free  

   

Registration coming soon!

  



 
Event Wrap-up

Women's Night Out "Paint Nite" Event 
Maureen Coventry | VHF Member    

  

We gathered again for another great Women's Night Out Event on the evening of June 4th. This time the activity was  "Paint Nite" at Burton's Grille located Virginia Beach. Gina Raymond from CSL Behring welcomed us and then Hemophilia Mom Gina Perez-Weiberg (from Chicago) went over the 10 strategies for overcoming language barriers. It was a very informative and helpful discussion. The delicious food was then served to where we could enjoy it and each other's company! It was truly nice meeting some new people and hearing their stories. After that, the painting began! You could really see everyone's own creativity come out in their art! It was such a fun evening with these ladies! What a fun and unique way to bring us together!

 

Family Fun Day at VA Safari Park 

Timothy and Joshua Noble | VHF Members      

 

On June 13th we went to the VA Safari Park in Natural Bridge with VHF and we had so much fun. When we got there, while we waited for our ride we were able to see the animals in their cages. We even went in the big bird cage that had loads of parakeets and we were able to hold some birds and feed them, they sat on my head.

 

Then we got on the wagon and the driver gave us buckets of feed for the animals while he gave us instructions, one that I remember was not to "fight" to keep my bucket if an animal takes it and guess what, a huge Llama took my bucket right out of my hands. It was so funny.

 

Our favorite animals were the deer and llamas because they were friendly and pretty. There was this huge animal with these horns that looked like they could really mess up your car, well that one had a huge tongue and kept trying to steal the bags from the middle of the wagon.

 

What made this safari so much fun was being there with all of our friends and hanging out during the wagon ride. We all laughed so much and had a great time. We want to say thank you to Ms. Wickline for this suggestion because it was so much fun and we really got close to the animals.  

 

Thank you to our sponsor DrugCo Health.  

 

Annual Statewide Educational Meeting 

Debi Williford | VHF member  

 

 

For 9 years I have looked forward to VHF's Annual State Meeting; and this year's meeting, held on June 20th in Suffolk, VA, by the water, definitely met my expectations; AND likely surpassed my kids with the awesome YMCA program.

 

My teenager, Patti, said "the obstacle course was fun for all ages, as were the other activities at the YMCA." She really liked the Friday night after dinner meeting options...the outside concert, pool, and hanging out with friends! To quote my son, Joel, "The high points were the obstacle course and shooting a BB gun for the first time."

 

I really liked how the adult program was conveniently located in one big room. Everything was close by (speakers, VHF Staff, Industry Reps and their information (fun and practical stuff), food, etc.). I particularly enjoyed the speaker for the women's break-out session and could have listened to her much longer. As always, it was great to see other families from all over the state who are also affected by a bleeding disorder. It's awesome watching our kids grow up together and support each other. The annual meeting is like a family reunion of sorts!

 

Mark your calendars and join us for next year's Annual Meeting in Charlottesville, VA on June 18, 2016. We are excited to announce that we will partner with Camp Holiday Trails for our children and teens program at next years meeting!  

 

Go HERE to see all of our generous sponsors.  

 

Camp Youngblood Update!

Ana Bagiano | CHT Camp Program Director     

 

 

7/30/2015: The kids are having an awesome time at camp! After a month of two two-week sessions, counselors have been exhilarated and re-energized by all of the passionate kids here. They've been going above and beyond to cram fun into every second of the camper experience: Cabin 1 Girls received a note from fairies, which resulted in a fairy walk (there are a TON of lightning bugs around the horse pasture, so the girls went on a walk to see all of the "fairies"). Last night, campers enjoyed a night swim, complete with glow sticks! Older campers enjoyed a ride on our brand new zip line.  

 

Here are some quotes I gathered from the campers:

"Best week ever! I love it here!" -Donavan, 11

"I sleep better here than at home." -Levi, 11

"All of the activities are really fun." -Emma, 12

"Camp is an amazing place that everyone should go to because it's magical." -Sam, 15

"The food is awesome!" -Anya, 10

 

THANK YOU to our 2015 Camp Youngblood sponsors: Accredo, AHF, Baxalta, Bayer Health, Bon Secours Health System, CSL Behring, CVS Caremark RX/Specialty Pharmacy, Drug Co Health, Grifols, Matrix Health, MedPro RX, Novo Nordisk, Option Care - A Walgreens Infusion Company, Pfizer, Superior Biologics, TACO Inc.

 Don't miss out on a wonderful experience for your kids! Camp Youngblood at Camp Holiday Trails will be back next year July 24-29, 2016 and applications are due April 30, 2016.

Go HERE for more information.

 

 
Donors

Thank You!

 

Listed below are individuals and organizations who have made a financial contribution from April 1, 2015 to July 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.

 

Accredo

AHF, Inc.

Allen, Carissa

Ama, Donyetta

Anonymous

Arrington, Robyn

Barker, Ashley

Baxalta

Bayer HealthCare

Biogen Idec Foundation

BioRx

Boehmer, Crystal

Bonfire Funds, Inc.

Bon Secours Health System

Bordone, Donna

Bordone, Zack

Bowers-Lanier, Becky

Bravelets

Brayshaw, Paul

Brennan, Tanya

Brinkley, Heather

Bunn, Aaron and Eileen

Bunn, William and Heather

Cartwrigth, Kelly Branam

Cleghorn, Tracy

Conner, Heather

Cottrill's Pharmacy, Inc.

Cowell, Charlene

CVS Caremark Rx/Speciality Pharmacy

CSL Behring

Daddio Household

Dault, Kaitlyn

Davidson, Colin and Krista

Dean, Kendall

Dowling, Carole and Frank

DrugCo Health

Duesing, Larry and Joan

Ebert, Reid

Eiden, Monika

Emergent BioSolutions

Epstein, Philip

Falwell, Beth

Fatsi, Michael


Flood, Colleen

George, Chris

George, Eric

George, Kathleen

Goergen Family

Grifols

Hairston, Phillip

Hardestydyck, Daniel

Harrold, William and Judith

Hayden, Kim

Hemophilia Association of the Capital Area

Hemophilia Federation of America

Heuple, Rhonda

HPC Speciality Pharmacy

Hubbard, John and Mary

Johnson, Charles

Johnson, Kevin

Johnson, Murai

Jones, Azure

Kaiser, Russell

King, Margaret

Krafcik, Richard

Krecek Family

Lawson, Megan

Markwith, Christopher

Matrix Health Group

McCauley, Ginger

Merritt, Chad

Midura, Megan

Moore, Sharon

Moorehead, Shirley

Morrision, Linda and Marvin

Mortimer, Kathy

National Hemophilia Foundation

Nicholson, Katrina

Noble, Stacey

Novo Nordisk

Nowlan, Eileen

O'Connor, Dorothy

Octapharma USA, Inc.

O'Neill, Megan

Parnell, Jean

Patient Services, Inc.


Pawliczak, Sabrina

Pfizer

Plessinger, Lindsey

Porche, Schuyler and Kaui

Puryear Douglas and Donna

Rakestraw, Sara

Reyes, Lamberto and Juvy

Rickmond, Lisa

Sands, Gerald and Dianne

Smith, Donald and Beth

Soleo Health

Spasojevich, Sarabeth

Stallings, Robert and Kim

Stielper, Michelle

Stone, Terry

Superior Biologics

TACO, Inc.

The Hemophilia Alliance Foundation

Trentham, Kim

United Way - South Hampton Roads

Valentino, Al and Marijane

Valentino, Jason

Walker Family

Walker, Dennis and Virginia

Warren, Daniel

Waters, Kelly

West, Jerry and Michele

Wickline, Davida

Williford, Debi

In Memory of Christie Black

Campbell, Susan

Dudash, Marc

Larsen, Brooke

Sarfan, Ed and Jody

White, John

Garry Campbell's State Farm Agency

GTS

Co-Workers of Craig Black


In Memory of Flora Crawford

Jimmie and Mary Shepherd

 

 

 

 
Community News
VHF Board of Directors

July 1, 2015 is the start to the new VHF "fiscal" year, as well as new terms for our Board of Directors. This is a time to say good-bye to some and to welcome others. Special thank-you to our Board Members who are rotating off this year - Nick Cady, Eric George, Stacey Noble and Al Valentino. VHF has appreciated your dedication and service.

 

 

Highlights of our new Board Members:

Kelly Cartwright - A Professor of Psychology at Christopher Newport University and a co-manager of the Facebook group Hemophilia Adoption.

 

Monika Eiden - A graduate of VCU who has received her Professional in Human Resources (PHR) certificate. She is a dedicated volunteer who is active with the United Way campaign.

 

Elizabeth "Beth" Leftwich - Has a Master's in Public Health and currently works for VDH as the HIV Prevention Education Coordinator.

 

Sara Rakestraw - A certified Oncology Social Worker with experience serving on non-profit boards.

 

Michael Welshonce - A graduate of West Virginia Wesleyan and works at Richmond's Department of Social Services.

Emerging Nonprofit Leaders Program
Kelly Waters | VHF Executive Director    

Join me in congratulating Heather Conner on her completion of the Emerging Nonprofit Leaders Program through Nonprofit Learning Point. This program is a dynamic, eight-month experience where participants foster a deeper understanding of their leadership capacity, advance their understanding and practice of leading the nonprofit sector, and strengthen their network of nonprofit colleagues. She participated in sessions on strategic leadership, organizational change, collaboration, and coaching others. Fellow participants said "Heather is a bright light for the nonprofit sector! She sees the big picture and can always be counted on to offer perspective and positive challenge. She offers a reassuring presence and is a supportive colleague." I hope you will agree - VHF is fortunate to have Heather as part of our team! 
Lyman Fisher Scholarship Winner
Grace Kaiser | VHF Member

My name is Grace Kaiser, and on May 22nd, I graduated from Louisa County High School in a three way tie for valedictorian. In the fall, I will be attending Virginia Tech where I was accepted into their honors program and their chemistry department. I aspire to then attend medical school in order to become a psychiatrist. This year I also have the privilege to be the recipient of the VHF Lyman-Fisher scholarship. 

 

I have been an active member of VHF since my brother, Max, was diagnosed with mild Factor 9 hemophilia when he was born in 2005. Since then I have participated in many activities each year, and I always look forward to supporting my brother and sister. Yes, my sister Emma too. She was diagnosed as a symptomatic carrier after my brother was born. It always amazes me how rough and tumble the boys can be even though they are bleeders. I worry about my brother constantly, even though his hemophilia is mild. Every function I attend gives me hope that there will be more and more help for them, and the support they receive from their network never ceases to astound me. I thoroughly enjoy attending each and every function.

 

I have a long road ahead of me in school, but I look forward to it. I would like to thank everyone that made it possible for me to receive this scholarship. I appreciate everything this organization has done for my family and me, and I look forward to attending even more functions in the future.
Baxter's BioScience is now Baxalta!

 

What's In a Name?

The name "Baxalta" reflects a renewed energy toward building an organization that is dedicated to improving the lives of patients around the world. A commitment to patients is at the heart of the company's strategy, values and behaviors. Baxalta's employees are part of a purpose-driven culture that encourages contribution of new ideas as well as close collaboration with patient communities. The company calls this energy the "Baxalta Spark."

 

A Vision That Inspires 
While the name is new, Baxalta's vision of Pursuing a Life Without Bleedscontinues to drive its work in hemophilia and other bleeding conditions. This clear vision inspires the kind of innovation that can lead to new therapies, the pursuit of scientific knowledge about bleeding conditions, and the development of close partnerships with the patients Baxalta serves to help foster a better understanding of their journey.

 

A Legacy of Innovation 
Today, Baxalta's portfolio of therapies for hemophilia and other bleeding conditions is one of the most robust in the industry. This portfolio is built on Baxter's history of leadership and innovation in addressing bleeding conditions. During the past six decades, Baxter has advanced the treatment options for patients with bleeding conditions by being first to market with a number of pioneering therapies. Baxalta will continue to pursue the best solutions for treating and managing bleeding conditions, leveraging both the most advanced science as well as the patient perspective.

 

  Go HERE to read more.

 

Study Focuses on Cardiovascular Disease in Hemophilia Patients

Source: Heplive.com, June 29, 2015

 

As life expectancy in people with hemophilia (PWH) continues to rise closer to the national average, hemophilia healthcare providers have grown increasingly interested in the conditions most commonly linked to aging. One of the more pervasive of these is cardiovascular disease (CVD), and associated conditions such as ischemic heart disease (hardening of arteries) and atrial fibrillation (irregular heartbeat rate/rhythm). A multidisciplinary team of investigators conducted a scan and review of medical literature associated with CVD in PWH published between 1980-2013. Their findings, "Consensus Review of the Treatment of Cardiovascular Disease in People with Hemophilia A and B," were published in the March/April issue of the journal Cardiology in Review.   


 Go HERE to read more. 
 

 
Upcoming Events

October

  • October 3 - 4 - Adult Retreat  RSVP (Virginia Beach)
  • October 15 - Educational Dinner (Tidewater Region)
  • October 24 - HACA National Hemophilia Walk (Washington, DC)
  • October 31 - Trick or Trot 5K and Monster Dash Fundraiser (Midlothian)

November

  • November 3 - Educational Dinner (TBD)
  • November 14 - Educational Lunch and Family 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)

January

  • January 17-18 - Advocacy Training and "Richmond Days" (Richmond)

757-705-1332


 

Thank you to our e-Newsletter supporter Baxalta  www.baxalta.com