Page 1

VOLUME 31

ISSUE 2 EDITOR HANNA BEARY

6300 ROCKWELL DRIVE NE, SUITE 104 • CEDAR RAPIDS. IOWA • 319-393-4007

UPCOMING EVENTS GOLF OUTING

JUNE 11TH • 11AM-2PM DIKE, IOWA

SUMMER CAMP JUNE 24TH-29TH MT. VERNON, IOWA

FAMILY EDUCATION DAY JULY 21ST WATERLOO, IOWA

FAMILY CAMP

AUGUST 4TH-5TH MT. VERNON, IOWA

ANNUAL MEETING AUGUST 24TH-25TH DES MOINES, IOWA

UNITE FOR BLEEDING DISORDER WALK/RUN OCTOBER 6TH HIAWATHA, IOWA

• • HEMOPHILIA OF IOWA MISSION • • To provide education and support for people with bleeding disorders and their family and friends.


TABLE OF CONTENTS

Page 3: HOI’s Annual Golf Tournament, Celebrating 25 years! Page 4: Camp Season is Near! Find out what you need to know Page 5: Unite for Bleeding Disorders Walk/5K and Walk Team Spotlight! Page 6: Advocacy From Your Couch, Problems With Access to Proper Healthcare? Page 7: UIHC HTC Updates Page 8: First Teen Program Was A Hit! Page 9: Introducing LEAD#1 Program and What’s Next Page 10: The Bloody Brunch was a Bloody Success! Page 11: First Steps: Family FUN Weekend! Page 12: 2018 Washington Days Page 13: Third Party Fundraising, How Your Community is Having Success Page 14: 2018 Annual Meeting, What you Can Expect to See Page 15: A BIG Thank you to our Contributors! HOI BOARD MEMBERS PRESIDENT: Mark Castenson TREASURER: Rita Carmona

2

SECRETARY: Maria Ormord PAST PRESIDENT: Kari Atkinson BOARD MEMBERS AT LARGE: Kathy Hix, Ryan Smith

ADVISORY MEMBERS: Lori Welch STAFF: Hanna Beary, Executive Director

HEMOPHILIA OF IOWA, INC.


CELEBRATING

25 YEARS!

ANNUAL HOI

GOLF TOURNAMENT Golf season is among us and that means that the golf committee is gearing up for the HOI Golf Tournament. This year HOI will celebrate our 25th year of having a golf tournament! We are very excited about this and we hope you are as well. The tournament will take place at Fox Ridge Golf Course in Dike on Monday, June 11th. The cost is $125 per person. In addition to 18 holes of golf with cart, we are planning a box lunch, roasted pork loin dinner reception, two drink tickets, as well as silent auction items. The golf tournament is one of our fundraisers that HOI hosts each year. The money generated from this event furthers our mission: to provide education and support for people with bleeding disorders and their family and friends. Also, we are always looking for silent auction items. If you would like to donate any items for our golf tournament, please contact the office at 319-393-4007 or hoi_director@ hemophiliaofiowa.org. We look FOREward to seeing you on June 11th!

BLOODLINE • ISSUE 2 VOL. 31

3


BLEEDING DISORDER CAMP SEASON IS NEAR Michelle Krantz

I almost cannot believe that another camp season is on the horizon. It finally feels real now that the weather is nicer. I look forward to this event every year, it is truly an important week for our kids. They learn independence, teamwork, self-reliance, and about their bleeding disorder (just to name a few) as well as make life-long friends. Just a few reminders and fast facts about our camp programs: WEEK-LONG BLEEDING DISORDER CAMP • June 24th -29th at Camp Tanager in Mt. Vernon, Iowa • Campers should have a bleeding disorder and be between ages 6-17 buy the dates of camp. • Each family is allowed one additional non bleeding disorder guest • Registration is now open, start at the HOI website to register. Registration ends May 20th. • Camp registration is $50 per camper • Our camp is otherwise a free to our campers. HOI raises the funds to support his program through various events, primarily the Golf Tournament which will be held June 11th at Fox Ridge Golf Course in Dike, Iowa. Please help support our camp!!! *For those of you who have registered, please remember to access the Ultra Camp website with the access code you were provided through registration. Please have online forms and uploads completed by May 20th. **As a reminder, if you get your care at the University of Iowa Treatment Center you do NOT need a physical or copies of your treatment plan. This only applies for those who receive their care at other treatment centers. Non bleeding disorder guest do NOT need a physical. We DO need copies of current immunization records and insurance cards for ALL campers. You can upload these to the ultracamp website or send them to Michelle Krantz at michellekrantz@uiowa.edu or fax number 319-538-8254. FAMILY CAMP WEEKEND • August 4th-5th at Camp Tanager in Mt. Vernon, Iowa • For children with bleeding disorders aged 3-5 and their family • If only 1 parent can attend, they can bring a support person as well • This camp is designed to get young campers and their parents ready for our week-long camp experience. Get to know the environment, the staff, and have a fun weekend with the family. • This camp is also free and again is funded by HOI, please help support this program by attending the Golf Tournament and participating in the Unite for Bleeding Disorder Walk/5k 4

HEMOPHILIA OF IOWA, INC.


WWW.UNITEFORBLEEDINGDISORDERS.ORG

The Clot Trot 5k/10k run/walk was one of our most successful events. Bringing the Bleeding Disorder Community together in good spirits. That is why we are thrilled to say we have joined the National Unite for Bleeding Disorder Walk Program for 2018! The Unite for Bleeding Disorders Walk/5K is a celebration for all Bleeding Disorder Community! By becoming a team captain you are standing up in your community to help raise awareness and support! This national program will occur in 40 different states in 2018! Hemophilia of Iowa is extremely excited to be apart of this great program for the first year. We believe that by coming together as a community today, we will create a higher quality of life tomorrow. We encourage you to create your team today!

Specialty Pharmacy. Experienced Care. At Accredo, we understand it can be difficult to live with a chronic or complex illness and subsequent care. As one of the nation’s leading and largest providers of specialty pharmaceuticals, our dedicated therapy teams work diligently to coordinate solutions for the challenges of those living with a bleeding disorder. With accurate and timely delivery of medication, as well as expert guidance through ongoing therapy directives, you can trust Accredo to provide experienced care. Contact us for more information. Patients call: 866.712.5200 Physician offices call: 866.712.5007

© 2018 Accredo Health Group, Inc. An Express Scripts Company. All Rights Reserved. HEM-00282-031918 amc8026 CRP17_A0043

SPOTLIGHT INTRODUCING THE DREAM TEAM!

We would like to introduce one of our newest team, The Dream Team! We are excited to introduce Mary and Brian Clark and children John and Joetha. Mary is very active with the First Steps program-ensuring a safe networking space for new families. John is a freshmen in high school with Hemophilia A. He’s had a passion for Summer Camp and is now finding a home in the LEAD#1 program. This is The Dream Teams first year involved in HOI’s walk program! We are very excited to see all that they accomplish! BLOODLINE • ISSUE 2 VOL. 31

(PICTURED JOHN AND MENTOR KOBI VOSHELL AT THE FIRST TEEN RETREAT)

5


ADVOCACY FROM YOUR COUCH KNOW YOUR LOCAL REPRESENTATIVES Advocacy does not usually take place just once a year on Hill Day. It should take place multiple times throughout the year, even if it is a Christmas Card. Building a relationship with your local representative is one of the best and easiest ways to help advocate for your community! We challenge YOU to contact a local representative this quarter and begin making a relationship with them.

MEET YOUR ELECTED OFFICIALS!

GOVERNOR Kim Reynolds (R)

LIEUTENANT GOVERNOR Adam Gregg (R)

CONTACT INFORMATION: 1007 East Grand Ave. • Des Moines, Iowa 50319 (515) 281-5211

WE ARE FAMILY Family is more than blood It’s the people that stick by you ARJ’s expert team of pharmacists and nurses deliver Iowans personalized home infusion care every day. Are you being treated like family?

We’re helping people just like you Last year, we secured $625,000 in third-party patient resources and assistance Our patients highly recommend us to friends and family People love our Ready Pack® supply kit for easy self-infusion Our pharmacy is conveniently located near you.

(866) 451-8804 arjinfusion.com/cedar-rapids 6

Where Caring is the Ultimate Factor.

TROUBLES WITH ACCESS TO PROPER HEALTHCARE? LET US KNOW!

Across the country families have been encountering limitations or restrictions from their current insurance plans. Are you running into roadblocks getting your factor product covered or faced other delays in treatment? Let us know Hemophilia of Iowa wants to hear about it. Through your participation, we will collect stories from across the country, collate the data, identify trends, and use the information to build cases for change. Let us know at Hemophilia of Iowa so we can help solve the problem and share your story with NHF and HFA so we can continue to advocate at the state and federal level. Through gathering stories and data we will be able to help you and your family through it and will help build a comprehensive case to advocate for the community. I was notified by mail on 3/10/18 by my insurance company stating that the factor assistance program that I have applied for (for my son) and was approved for will not be used for my deductible or out of pocket maximums. I do know that I have benefited from this working in my families favor in the past due to it applying towards them, but this letter not only states that I can no long apply this assistance but it is being back dated to Jan. 1, 2018. My families out of pocket max is $6850 per calendar year, meaning I have to come up with this money for this current year and the first week of January for every following year. I have a HSA insurance plan through my employer and that is the only option allowed from my employer. I am curious how this is legal or even right to do, especially considering for a family, the max. legal deposit amount to an HSA is $6,900 dollars. Please my family is desperate to find an affordable option for my son to receive his medication.” -Local Iowa family Families across the state and nation are having this very same issue. This family had reached out to multiple sources, Hemophilia of Iowa being one of them. With the help of our national partners we were able to contact the insurance provider and within the next business day they had retracted their statement and will be accepting their factor assistance program. Through your participation we will be heard. Contact Hanna Beary h.beary@hemophiliaofiowa.org or visit www.hemophiliafed.org for more information

HEMOPHILIA OF IOWA, INC.


HTC INVESTIGATORS LOOK AT UDC DATA ON

FEMALES WITH BLEEDING DISORDERS The Hemophilia Treatment Centers (HTCs) Network Investigators, a group of researchers from several U.S. HTCs, recently published a study on disparities associated with bleeding symptoms, age at diagnosis and provider interventions for females with bleeding disorders. Females living with an undiagnosed bleeding disorder are unwittingly foregoing the care and resources that can have real world implication for their quality of life, including appropriate treatment, education and psychosocial support.

The article Differences in Bleeding Phenotype and Provider Interventions in Postmenarchal Adolescents when Compared to Adult Women with Bleeding Disorders and Heavy Menstrual Bleeding,” was published in the January issue of the journal Haemophilia. The lead author was Lakshmi V. Srivaths, department of pediatrics, section of hematology/oncology at Baylor College of Medicine in Houston, TX. Investigators focused, in part, on the differences in phenotype of adolescent vs adult women with heavy menstrual bleeding (HMB) and a bleeding disorder (BD). Study data was drawn from the U.S. Centers for Disease Control and Prevention’s Universal Data Collection (UDC) surveillance project, which culled information annually on enrolled patients at 135 federally funded HTCs. The project included annual data from 1998-2011. In 2009 a female component was added to the UDC which was implemented in 23 HTCs. The module was designed to capture data related to diagnoses, menstrual bleeding, other bleeding symptoms, obstetrical-gynecological symptoms, treatment and gynecological/reproductive history. The UDC data encompassed 269 females with HMB/BD, including von Willebrand disease (VWD), other factor deficiencies and platelet disorders. Of these, 79 were adolescents (median age 16) and 190 were adults (median age 27). The majority enrolled were diagnosed with VWD (223; 83%) with the remaining diagnosis encompassing BLOODLINE • ISSUE 2 VOL. 31

other factor deficiencies, platelet function disorders and unspecified BDs.

The median age at diagnosis was 12 for adolescents vs 16 for adults. Forty-five adolescents (57%) and 138 adults (73%) experienced a delay in diagnosis, defined by the number of years passed since a patient’s first bleed. Srivaths and her co-authors observed that there was a reduction in long delays in diagnosis for adolescents vs adults and that this could be an indicator of a positive trend. We suspect the difference in delay in diagnosis in adults vs adolescents is because of improved earlier diagnosis due to greater awareness in the past decade through national advocacy organizations such as the National Hemophilia Foundation and the Foundation for Women and Girls with Blood Disorders.” Differences were also seen in bleeding phenotypes of adolescent vs. adult females with HMB/BD. Adults experienced more frequent bleeding complications, anemia, gynecologic procedures and surgeries. While both groups were treated with hormonal therapy and antifibrinolytic agents equally, the synthetic hormone desmopressin acetate was utilized more often by adolescents due in part to its ease of administration

via nasal spray. Adults more often opted for hormonal therapy and surgeries. The authors suggested that this was due to the additional contraceptive benefits of hormonal therapy and a preference for the type of definitive outcome” associated with surgical interventions. The authors cited several study limitations, including those associated with a small patient sample size and the use of retrospective, self-reported study data based on patient recall. Data were also limited to patients enrolled at HTCs, which may not be representative of the broader U.S. population. Despite the limitations, Srivaths and fellow investigators note that this study is important as it represents the first concerted effort to compare the bleeding phenotype, diagnosis and management of females with HMB/BD. They acknowledge that while public awareness related to women affected with bleeding disorders has been enhanced in recent years, that additional studies are necessary to establish definitively whether better patient/ healthcare provider education translates to better outcomes. The results of such studies could inform future efforts to reduce hematologic/gynecologic complications for females with BD/HMB.

The hemophilia treatments of today were once the dreams of yesterday. Proof that when

SCIENCE AND THE COMMUNITY come together, great things happen.

Let’s put science to work GenentechHemophilia.com ©2018 Genentech USA, Inc. All rights reserved. EMI/012618/0022

7


FIRST EVER TEEN EVENT WAS A SMASHING SUCCESS! Michelle Krantz

On March 11th and 12th teens and friends across the state of Iowa gathered to spend the weekend connecting with their bleeding disorder community while gaining strong, independent skills. A big shout out to our amazing teens/young adults, the parents that drove them all the way to Boone, and to our fantastic mentors! The success of this program is credited to all of our participants. We spent the weekend at the beautiful YMCA camp in Boone, IA. While most of the teens/young adults knew one another, we spent time familiarizing with the mentors. Icebreaker activities, blindfolded pie making, zip lining, life sized hungry hippos, and ping pong (with some interesting rules) were just some of the fun activities we enjoyed.

• Bowling • Water balloon/gun war • Top Chef/Chopped Kitchen challenge • Trip to Chicago • Find an opportunity to use advocacy skills • Learn about insurance • Learn how factor is made • Explore the history of bleeding disorders/talk with older persons with bleeding disorders about their experiences.

We were joined that evening by HFA’s Sarah Shinkle who led us through a great advocacy workshop. We learned how to tell our story, which is an important part of advocacy. Throughout our time together we were able to learn more about one another and identify some of the struggles we face related to bleeding disorders and life in general. This workshop was a great bridge to our discussion about our goals and visions for this this program going forward. After some very successful brainstorming our group set program goals, future events and activities, ways for our group to fundraise to support some of the larger events, and debriefed the things we liked or wanted to improve on from this weekend. The weekend was concluded with a panel of our mentors and one of our teen participants who spoke about some of their experiences growing up with a bleeding disorder and how that has shaped them today. Possible future activities/topics: • Camping Trip • Partner with another teen/young adult program • Water Park • Canoeing/Kayaking • White water rafting 8

HEMOPHILIA OF IOWA, INC.


L.E.A.D#1

I bet you were wondering what LEAD#1 stands for. We brainstormed some of the things we wanted to stand for and accomplish. We were able to come up with this acronym which stands for leadership, education/empowerment, advocacy, development. The #1 one symbolizes our community’s teens and young adults coming together as one to learn and excel in these areas. Of course all of this will be done with one important principle being upheld…having fun. I had lots of fun! I felt like everyone was really easy to get along with even the people who I haven’t known. It was just so much fun I don’t feel like anyone got bored really there were lots and lots of laughs shared. We did lots of fun things like ziplining and sledding even though it was cold out it didn’t really matter we still had fun. Me, Gavin, Cade had made up this game called racket pong it was so much fun!” -John Clark

WHAT’S NEXT? The team has been hard at working planning our next adventure. Our next outing will align with the HOI Annual Meeting on August 24-25 where we will be introducing the Teen Track for 2018. The Annual Meeting will take place at the Embassy Suites in downtown Des Moines, IA for 2018. We invite families of all to join us August 24th-25th! Des Moines offers a wide variety of educational and fun opportunities. We plan to have the LEAD#1 group offsite for the majority of the weekend, exploring new topics and adventures with their community. We invite any teens to take a role in planning this event! We would also like to invite anyone who would like to participate in our upcoming events as a teen/young adult, mentor, or if you have a special skill or hobby you would like to share. You may contact Hanna Beary (h.beary@hemophiliaofiowa.org) or Michelle Krantz (michelle-krantz@uiowa.edu).

BLOODLINE • ISSUE 2 VOL. 31

9


THE BLOODY BRUNCH

A BLOODY SUCCESS!

Written by Hanna Beary

What is better than taking an opportunity to fly high above Iowa City? Doing it with your Bleeding Disorder Community! March was a big month for the Bleeding Disorder Community! We celebrated Bleeding Disorder Awareness Month and the signed Proclamation by Governor Kim Reynolds. We gathered, we laughed and we celebrated! The Wine Tasting spinoff event took place March 18th at the Iowa City Municipal Airport. Families from across the state of Iowa traveled to celebrate with their community while raising crucial funds for the Scholarship Program. We enjoyed Mosley’s BBQ sandwiches, slushies and Bloody Mary’s as we raffled off airplane rides! The families and kiddos had a blast viewing and sitting in an old WW2 trainer aircraft while waiting for their ride. The 15 minute trip high

10

above Iowa City took you over the new Children’s Hospital, Kinnick Stadium and all the beautiful landmarks at the University of Iowa. The people have spoken! The Bloody Brunch will be back in 2019. We will continue to grow this new event in order to provide a fun community celebration while increasing the opportunity to provide those in the community scholarship opportunities. For 2018 we are excited to have a high number of scholarship applicants! It is our pleasure to be able to help further the education of those in our community. Funds for the Scholarship Program are strictly provided by the Bloody Brunch, so your support is vital! Thank you to all who were able to attend the Bloody Brunch! We are excited to be able to help grow this event because of your support. Thank you to our generous sponsors Pfizer, Shire, ARJ Infusion Services and Aptevo Therapeutics.

HEMOPHILIA OF IOWA, INC.


FIRST S T E P S FAMILY FUN EDUCATION WEEKEND The First Step program hosted their Family Fun Education Weekend on February 24-25 at Adventureland Inn. Our day started off lunch and then our kids ages 4 and up headed off to the science center for a day of exploring and fun. The kids 3 and under enjoyed playtime at the hotel. The parents had a couple of hours of education and camaraderie with each other. Our topics this year were Putting Stress in its Place, Nurturing Relationships both of which were presentation by Dr. Dave Robinson and Let’s Talk Bullying, for Parents presented by Robert Louden, LCSW. There was valuable information for all that attended and the nice thing about this weekend is it is a was very specialized we have the time allowed to catered the discussions for each individual family and child as questions arise. Our day finished then with a pizza party and of course fun at the nice pools that Adventureland Inn has. Sunday our families had breakfast and then departed for home. We had 12 families in attendance. This is event is a favorite of most of our families.

We do want to say a special THANK YOU to our Educational Programming sponsors, Hemophilia Federation of America (HFA) Families Program and National Hemophilia Foundation (NHF). Do you know what the First Step Program is? If not, please let me share…..It is a program designed to provide education and support for families with young children that have a bleeding disorder. The program is designed to provide a venue for parents to come together to have support and camaraderie with other parents that understand what you are going through. First Steps plans up to 3 events a year and we invite all families that have children ages 0-8 and families that have been active in the program. So we have a nice range of ages, diagnosis and experiences for young families to really take advantage of when we are together. The program is one of Hemophilia of Iowa’s programs so we do ask that all attendees be members of Hemophilia of Iowa and then a small registration fee is asked for to confirm your registrations etc. We generally try to

set our registration fees at 10% or less of the cost of the event. Please feel free to contact your First Step Parent Coordinator….. Kari Atkinson (319) 721-3964 caklatkinson@aol.com or Mary Clark (641)895-7003 johnclaudesmom@ gmail.com If you are not comfortable contacting us direct please feel free to contact either Tami, Karla or Michelle at the treatment center as they can share with you information about this program. We would be more than happy to help you and your family in any way that we can. First Steps is only possible due to our generous sponsors. Special Thank You to the following companies for your generous sponsorship for our 2018 program ARJ Infusion Services, CSL Behring and Genentech.

BLOODLINE • ISSUE 2 VOL. 31

11


2018 WASHINGTON DAYS Written by Hanna Beary

• CDC Division of Blood Disorders, which supports critical surveillance and prevention activities

As some may know March we celebrated Bleeding Disorder Awareness Month across the nation! Board member Rita Carmona and myself had the opportunity to travel to Washington D.C. to participate in the 2018 Washington Days hosted by the National Hemophilia Foundation. Some may think that there could not be much we could advocate on this year, but that is far from wrong. 2018 is an extremely important year to continue to build relationships and advocate for the Bleeding Disorder Community. While in DC we had the opportunity to meet with Senator Joni Ernst Legislative Aide, Representative Rod Blum’s Legislative Aide, Senator Chuck Grassley’s Legislative Aide and Representative David Young. We took advantage of the opportunity to share our family and community stories. We expressed the importance for access to comprehensive insurance and access to care are critical to

• Support HTC participation in the 340B Program • Reject proposed cuts included in the President’s Budget and maintain current funding for levels for hemophilia relationed programs

helping people with bleeding disorders lead a healthy and productive lives. We restated that we NEED Congress to support policies that ensure that this access is maintained. Primary asks: • Support federal standards for public and private insurance so that the patience protections and access to insurance is maintained • For private plans: maintain current preexisting conditions policies, the ban on lifetime and annual limits, and federal standards for Essential Health Benefits

Overall we felt as if our time was a success! Representatives and the Legislative Aide’s were very responsive to the asks. When we mentioned our concern with the Presidential Budget for 2019 we were reassured that Congress holds the purse”. The budget cuts proposed could most certainly mean cuts in the hemophilia program in the HRSA Maternal and Child Health Bureau’s Special Project of Regional and National Significance (SPRANS) Program. It was an incredible feeling knowing that we were making great strides for the bleeding disorder community in Iowa and across the nation. It shows that relationships with Representatives and Senators as well as local representatives will be extremely vital in the upcoming years. There are big changes ahead and it is up to us to stay on top!

• For Medicaid: maintain the Medicaid expansion and oppose state waivers that could threaten meaningful coverage • Support federal hemophilia programs at CDC and HRSA that ensure access to care for people with bleeding disorders • HRSA Maternal and Child Health Bureau Hemophilia Program, which provides funding to hemophilia treatment centers and all participation in the 340B Program, which supports comprehensive care 12

HEMOPHILIA OF IOWA, INC.


THIRD PARTY FUNDRAISING

HOW TO DO IT What is a Third Party Fund-raiser?” A third party fundraising event is when a business, organization, community group, school or individual hosts an event or program to benefit Hemophilia of Iowa. It is planned and executed independently of HOI.

Why should I have a Third Party Fund-raiser for Hemophilia of Iowa?” HOI is funded mainly by pharmaceutical/industry companies and individual donors and supporters. In order for HOI to continue to support families affected by inherited bleeding disorders and provide resources for our community—including unbiased medical information and support, Medic Alert bracelets, educational events, Summer Camp, Teen Programs etc.—so that our members can continue to live healthy and active lifestyles without limitations, we need your help. It is as simple as that. We need your help. I want to organize a fund-raiser for HOI but I’m not sure what to do.” Listed below are some ideas of the many ways that you can help raise funds and awareness for HOI. This list is by no means exhaustive; let your creativity guide you! • Collect Donations: Set out collection canisters next to cash registers to encourage your customers to help you support HOI. • Host a fund-raiser: Host a Benefit Concert, have a bake sale, a car wash or donate a percentage of a designated night’s profits, Be Creative!

• Designate the HOI as the beneficiary for your event: If your business or organization hosts an annual event that generates funds, consider donating a portion of the proceeds. I want to host a fund-raiser, what should I do next?” Contact Hanna Beary at h.beary@hemophiliaofiowa.org or 319-3934007 to help get things rolling! What can HOI do to help with my fundraiser?” There are limits to how we can help, below is a list of some of the things we can offer. Resources HOI may be able to provide include: • Promotion through the HOI website, Instagram, Facebook and Twitter Account. • Materials such as Chapter brochures about programs and services • A representative from HOI to speak at your even • Access to our PayPal account in order to collect donations link from our website for credit card donations The event sponsor is responsible for all details of the event including: • Underwriting all of the related costs • Printing of all materials • Creating flyers to publicize the event • Working at the event

FUNDRAISING SUCCESSES! MEYER CHRISTMAS TRIVIA

The holiday season is a time for family, laughter and generosity. At family Christmas every year Bill and Carol Meyer and family host a Family Trivia Game where each participant donates $20. At the end of the game they agree on a cause to donate the proceeds to. This year the Meyer Christmas Trivia raised over $400 and was donated to Hemophilia of Iowa! It was easy doing this. It was just an event that we do every year for Christmas. Instead of prizes, everyone donated $20 to play trivia and we donated that money to HOI. Then, we matched with Thrivent Financial and that’s how we got the items to donate. You can do it with any event! Just email me with any questions!” Carol Meyer said. BLOODLINE • ISSUE 2 VOL. 31

13


2018 ANNUAL MEETING

WHAT YOU CAN EXPECT TO SEE

Written by Hanna Beary

Hemophilia of Iowa is excited to announce that the 2018 Annual Meeting will be at a new location! Join us August 24-25 at the Embassy Suites downtown Des Moines, IA for this fun-filled weekend! A special thank you to everyone who has participated on the Education Committee and has played a crucial role in the selection of topics for this weekend. Drum roll please….. WHAT TOPICS YOU CAN EXPECT TO SEE IN 2018! After reviewing last years education surveys, the committee selected the following topics for us to dive a deeper look at: • Women in the Bleeding Disorder Community • von Willebrand’s Disease • Hemophilia and the Clotting Cascade • Nonpharmaceutical Pain Control • Social Media in the Hemophilia Community • How to Cope with Stress • Infusion Room This weekend is sure to offer every member of the family something. New for 2018 we will be adding a Teen Track to the programing! The teens and young adults will go offsite with their peers in order to experience their time to the fullest. The LEAD#1 group lives by four pillars: LEADERS, EDUCATE/ EMPOWER, ADVOCATE, DEVELOP. We are excited to bring in a healthy and active living lifestyle to this adventure! Save the date now and keep an eye out for when registration opens! We look forward to seeing you and your family in August!

14

HEMOPHILIA OF IOWA, INC.


THANKYOU $6,000-$2,500 HEMOPHILIA ALLIANCE FOUNDATION APTEVO BIOTHERAPEUTICS LLC HEMOPHILIA FEDERATION OF AMERICA CVS PFIZER INC GENENTECH USA $2,250-$1,000 ARJ INFUSION SERVICES, INC. BAYER HEALTHCARE ACCREDO HEALTH INC BRIOVARX TYSON DC UFCW 222 $750-$250 NHF EXPRESS SCRIPTS, INC

MEYER, BILL & CAROL MIDLAND INFORMATION RESOURCES MERCH BANK CARD FOLKERTS, ROBIN KASEMODEL, BRIAN $220-$100 NETWORK FOR GOOD MADDY, PAUL & JACKIE VALERIE FOUST ANONYMOUS - BLOODY BRUNCH WATKINSON, KARLA & BILL CARMONA, RITA KELLEY, SHANE BOBST, JAIME CASTENSON, MARK & JULIE VANDER BEEK, KARA TRANSAMERICA EMPLOYEES

BLOODLINE • ISSUE 2 VOL. 31

TO ALL OF OUR CONTRIBUTORS FOR THEIR FINANCIAL CONTRIBUTIONS FROM • 12/1/2017-4/30/2018

BEARY, CINDY BULLOCK, TAMARA & BRIAN LEHMAN, SARA LENTZ, DR. STEVEN $90-$50 MORGAN, DEBORAH KASEMODEL, RONALD & BETH SMITH, RYAN ATKINSON, KARI & CRAIG CIFRA, CHRISTINA ORMOND, MARIA & ANDREW STABER, JANICE DR. WILLIAMS, DOMINIQUE IOWA ONE GIFT IOWA ONE GIFT FULTON, MARILYNN CASEY, STACY

HIX, KATHY NEWMAN, BRENDA VONGSOUVAHN, JOHN $45-$1 MEYER, MICHELLE JOSH HEMANN IOWA ONE GIFT BEARY, SARA GACKE, KYLE LEHMAN , MEL & JEAN MEYER, ANDY & ABBY SCARFF, DAVE COSGOV, CAROL HIRCHAK, SPENCER THOMPSON, ZANE & PAULA MARTINEZ, VICTORIA

15


The medical information contained in this newsletter is for information purposes only and is not to be taken as medical advice. If you have any questions or concerns, always check with your healthcare provider.

HEMOPHILIA OF IOWA 6300 ROCKWELL DR SUIT 104 CEDAR RAPIDS, IA 52402

Candidates Sought for Board of Directors

Although candidates for the Board can contribute through a variety of ways, we are looking for experience and skills in the following areas: • Leadership • Non-profit organizations • Facilitation skills • Public relations/marketing • Legal If you feel you or someone you know could enhance the leadership on the Hemophilia of Iowa, Inc. Board of Directors, please contact the office at: Hemophilia of Iowa, Inc. 6300 Rockwell Drive NE, Suite 104 Cedar Rapids, IA 52402 Please call 319-721-3964 or email h.beary@hemophiliaofiowa.org for further information.

Spring BloodLine Volume 31 issue 2 final  
Spring BloodLine Volume 31 issue 2 final  
Advertisement