OIF E-News - April 2014

In this issue:

2014 OIF National Conference

Upcoming Events

From the Information Center

From the OI Foundation



2014 OIF National Conference, August 1-3 in Indianapolis, Indiana

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The OIF National Conference 2014 is just around the corner! Attendees will enjoy three days in the great city of Indianapolis, IN filled with informational sessions, medical consultations, specific forums and fun. Conference registration and hotel reservation information are now available at www.oif.org/conference. Early bird registration ends on April 30, 2014.

 Important Deadlines
Conference Scholarship applications are due by April 11th
Earlybird registration ends on April 30th
Medical Consultation appointments available beginning May 1st
Deadline for the $149/night hotel rate is July 1st


Important Note About Hotel Reservations

The hotel is almost sold-out of standard rooms on Thursday, July 31st. There are however 21 accessible rooms still available as of April 4. If you have not already, please make your hotel reservation as soon as possible! If you have trouble making a reservation, please contact Erika at ecarter@oif.org. There are still plenty of rooms available on August 1st, 2nd, 3rd and 4th.

To make your reservation, visit https://resweb.passkey.com/go/OIF2014 or call 866-704-6162 and mention that you are with the “Osteogenesis Imperfecta Foundation” National Conference. 

Pre-Conference Forums

Reserve your space now to participate in one of the OIF Pre-Conference Forums!  The OI Women’s Forum and the OI YEP (Young, Empowered, and Proud) Youth & Young Adult Forum will be taking place on Friday, August 1st before the Opening Session of National Conference begins.  Topics for the OI YEP Forum will include Claiming your Own Identity, Living Independently and Relationships.  There is no cost to attend the OI YEP Forum and lunch will be on your own.  Topics for the Women’s Forum will include women’s health, pathways to parenthood, and creating a positive self-image. There is a $45 fee to cover registration for the Women’s Forum, and lunch is provided.  Space is limited in both events, so register now! For more details and registration information, visit www.oif.org/conference.  If you have questions, please email Bonelink@oif.org.

 

Medical Consultations

We will begin taking appointments for National Conference medical consultations on May 1st.  For a complete list and directions on how to sign up, visit the Conference website at www.oif.org/conference and click on the tab for medical consultations.

 

2014 Talent Show!

The Talent Show is back again for the 2014 OIF National Conference in Indianapolis, IN. If you have a special talent you would like to share, please sign up! Applications will be available on the OIF website and will be shared through conference emails and Facebook. You must sign-up in order to participate, and must be a conference-registered attendee. There is no age limit. All acts should be no longer than two minutes. The Talent Show will take place Friday, August 1 at 7pm, with a rehearsal prior to the show. Please contact Susie Richard at director@opencircletheatre.org if you have any questions.

 

National Unbreakable Spirit® Walk-n-Wheel- Thursday, July 31st

To kick-off our National Conference weekend, the OI community will come together to participate in the National Unbreakable Spirit® Walk-n-Wheel! Beginning at the JW Marriott, participants will walk or wheel one of Indianapolis’ most beautiful landmarks, the Canal Walk of White River State Park. You can choose between the 1k or 5k courses (or shorter!), both of which will end back at the JW Marriott where we will celebrate all of our participants and supporters. Walk or wheel individually; form a team with your family, friends or support group members; volunteer; become a supporting sponsor; or show up to cheer on the sidelines. Help us take Indianapolis by storm and make the Unbreakable Spirit® of the OI community known! For more information or to set up your personal team raiser page, visit www.oif.org/WalkAndWheelIndy or contact Melissa Bonardi at mbonardi@oif.org.

 

Please contact conference@oif.org with any questions about the 2014 OIF National Conference. We look forward to seeing everyone in Indianapolis!

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Events

Happy Bone China Tea Week!teacup+vintage+image--graphicsfairy3c.jpg

Bone China Tea 2014 is this Wednesday, April 9, 2014! We are ecstatic to have so many dedicated online and offline Bone China Tea hosts and supporters this year. Check out some of the 2014 hosts’ online Bone China Tea pages to support them in their fundraising efforts!

 Don’t forget to donate the money you save by participating in this virtual event from the comfort of your own home. Wish you were more involved with Bone China Tea 2014?  You can lead a Bone China Tea at any point throughout the year! For more information, contact Danielle at DCymber@oif.org.

 

Awareness Week

We have one more month to achieve our goal of reaching 100,000 people through social media before Awareness Week. Since February 1st, our [SHAREforAWARENESS] posts have reached OVER 77 THOUSAND PEOPLE! Keep up the "Sharing" and "Retweeting"!

Volunteers nationwide are raising awareness for OI by planning Unbreakable® Spirit Walks and events to take place during Awareness Week 2014:

Saturday, May 3

Sunday, May 4

Tuesday, May 6

Friday, May 9

Saturday, May 10

Unbreakable Spirit® Walks:

Buzzards Bay, MA
Nashville, TN

Unbreakable Spirit® Barbeque: Granger, IA

OI Benefit Ball: Greensboro, NC

Proclamation Event: Albuquerque, NM

Unbreakable Spirit® Walk for OI: Framingham, MA

Wishbone Day!

Dance for Better Bones: Orleans, MA

National Blue Jeans for Better Bones Day: EVERYWHERE!

7th Annual Central Texas Walk-n-Roll: Round Rock, TX

Unbreakable Spirit® Walk: Uhrichsville, OH

Wear blue jeans to raise awareness during OI Awareness Week in your school, office and/or community! Take part in the OI Awareness Week National Blue Jeans for Better Bones Day on May 9, 2014. Contact Danielle at DCymber@oif.org for a Blue Jeans Leader Kit.

Hang National OI Awareness Week posters! Print the PDF posters from the Awareness Week webpage  to hang in your community. For full-sized posters, contact Danielle at DCymber@oif.org.

Proclaim OI Awareness Week Nationwide! Colorado, Connecticut, Illinois, Indiana, Missouri, New Mexico, Rochester, NY, Washington, DC, and the House of Representatives have proclaimed May 3-10, 2014 as National OI Awareness Week  2014, has your state? To learn how to submit a request, contact Jessica at JFinkel@oif.org

New item! Want to help raise awareness for OI? Need items for an event or fundraiser?OIF Keychain Check out the OIF online store for some new OIF Merchandise! One of our newest items is the OIF Unbreakable Spirit® Keychain (pictured)


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From the Information Center

Getting in Shape for Summer and for the 2014 OIF National Conference!

Spring has finally sprung! Are you thinking about getting back in shape for the summer? Well, it is also great timing to get in shape for the 2014 OIF National Conference and Walk-N-Wheel!  Here are a few suggestions to start planning for and living a healthier lifestyle this spring and summer:

  1. Talk to your doctor if you want to try a totally new activity.
  2. Plan ahead for summer time safety, especially getting in and out of swimming pools.
  3. Listen to your body. Start slow and don’t rush or overdo it.  If you are a wheelchair user or spend most of the time sitting, watch the Hospital for Special Surgery’s video on Wheelchair Based Exercises for People with OI (http://www.hss.edu/conditions_wheelchair-based-exercises-osteogenesis-imperfecta.asp).

 

OI Bone & Health Tips

Drinking Cola- Beware!

According to the latest research, drinking more than one cola- diet or regular- a day can have a negative impact on bone tissue.  The problem with cola is the phosphate levels, not the carbonation, like some may think.  Club soda, seltzer, and sparkling water are perfectly fine alternatives. 

Staying Comfortable in a Cast

The American Academy of Family Physicians suggests the following ways to stay comfortable while wearing a cast:

  • Prop up the injured limb (if applicable) so it is above the level of your heart.
  • While you rest, wiggle your toes or fingers.
  • To ease the pain, ice the injury for up to 30 minutes.  Make sure the ice doesn’t get the cast wet or actually touch the skin.
  • Check with your doctor if you think you need pain medication

 

Consumer Survey: Clothing and Shoes

The following survey  out of the University of Missouri was brought to our attention. We’re told that it takes about 30 minutes to complete the survey. Adults who have a physical disability, parents of children with a physical disability or caregivers are eligible to participate. Here’s the announcement:

Research Participants Needed for study: Apparel-Related Barriers to Participation Survey

Are you living with a disability, or a parent/caregiver of someone living with a disability? Do you have trouble finding suitable clothing or shoes? Please tell us all about it through this online survey: https://qtrial.qualtrics.com/SE/?SID=SV_cSExuKMZttQ9mE5

Please contact Dr. Kabel the study coordinator if you need more information: kabela@health.missouri.edu.

Participants will be compensated for their time with a $10 gift card.

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From the OI Foundation

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Nominations for the 2014 Volunteer of the Year Awards!

Know a volunteer from the OI community that deserves to be recognized for all of his or her hard work? Nominate them for the OI Foundation’s 2014 Volunteer of the Year award. We are so thankful for all of our volunteers and participants who provide support in helping improve the lives of those living with OI. The Foundation recognizes these great volunteers by presenting three awards to recognize outstanding contributions to the community- a dedicated service award, a youth award and a volunteer of the year award. The person named volunteer of the year will be recognized at the 2014 National Conference.

Click here for the 2014 Volunteer of the Year Nomination form. Please submit your entries to Jessica Finkel at jfinkel@oif.org by April 28.

 

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