OIF E-News - March 2014
In this issue:
2014 OIF National Conference, August 1-3!
From the OI Foundation
From the Information Center
OIF Advocacy Update
2014 OIF National Conference, August 1-3 in Indianapolis, Indiana
Registration is now open for
the 2014 OIF National Conference! Now is the time to make your hotel
reservations for the 2014 OIF National Conference! The conference hotel, the JW
Marriott in downtown Indianapolis, has set aside a block of rooms for
conference attendees and is offering a discounted room rate of $149 per night.
for everything you need to know about the OIF National Conference, including a
Scholarship applications are due by March 28th
Earlybird registration ends on April 30th
Medical Consultation appointments available beginning May 1st
Deadline for the $149/night hotel rate is July 1st
To make your reservation at the discounted rate, visit https://resweb.passkey.com/go/OIF2014
or call 866-704-6162 and mention that you are with the “Osteogenesis Imperfecta
Foundation National Conference". Since the hotel has set aside a block of
rooms for OIF attendees, if you don't mention that you are part of our group,
you may be told the hotel is sold out. So remember to tell them you are
attending the “Osteogenesis Imperfecta Foundation National Conference"!
begin making your travel and hotel arrangements, don’t forget about our
pre-conference activities on Thursday, July 31st and Friday, August
1st, before the official program of the National Conference begins at 4pm.
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. You
can 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 email@example.com.
Friday, August 1
Medical Consultation appointments will be held from 8:30am-3pm. This
special feature offers people attending the National Conference the opportunity
to meet with specialists, who are experts in OI, for a one-on-one in depth
conversation. While no examinations can be given, reports and x-rays may be
reviewed. Appointments are free of charge but must be scheduled in advance with
the OIF. Registration for Medical Consultations will open on May 1st.
Second Annual Women’s
Back by popular
demand, the OI Women’s Forum will take place from 9am-4pm. This forum is for
women with OI, 18 years and older and requires an additional registration fee
to attend. Space is limited. Topics will include health and social issues
affecting women with OI.
The Youth Forum will
begin at 10am and end before the Opening Session of the National Conference at
4pm. The Youth Forum is open to youth and young adults ages 16-25 and will
feature presentations and discussions relating to young adults. Topics include living
on your own, school and career, and social life. There is no additional
registration fee to attend this event.
Please contact firstname.lastname@example.org with any questions
about the 2014 OIF National Conference. We look forward to seeing everyone
From the OI Foundation
Bons Temps in DC
We would like to thank
everyone who came out to the Gaylord National Resort on Saturday, March 1st
to celebrate the 14th Annual Fine Wines Strong Bones benefit.
Between the new addition of our OI Casino and the fun loving Mardi Gras theme,
this year’s event was the most successful one yet!
The Board of Directors and staff of the OI
Foundation would like to extend a special thank you to our guests who
participated in the Fund the Mission portion of our live auction. Our
professional auctioneer, Barry Cherwin, had nearly a quarter of the over 200
attendees raising their paddles to support the OI Foundation’s Medical Consults
and Emergency Grant programs. We were touched by the generosity we witnessed.
Have You Ordered Your Bone China Tea Invitations?
China Tea is less than one month away on April 9, 2014! Hosts from several
states have involved their family, friends and communities in this fun and
simple tradition. Check out some of the 2014 hosts’ online Bone China Tea pages
for inspiration or support them in their fundraising efforts! The Bone China
Tea host that raises the most money will receive an OIF merchandise gift!
It’s not too
late to be a Bone China Tea host! Simply order your FREE printed invitations TODAY! To
order, contact Jenny and Susie Wilson at email@example.com,
firstname.lastname@example.org or (239) 482-0643. Interested in hosting your Bone China
Tea online? Visit www.oif.org/bonechinatea
to create your online Bone China Tea donation page. For more information,
contact Danielle at DCymber@oif.org.
Someone to Serve on the OIF Board of Directors
The OI Foundation is
currently seeking nominations for members to be on the Board of Directors. Each
member serves a three-year term, beginning July 1, 2014. The Board Development
Committee looks for nominees with qualities such as a personal connection to OI
and experience in various areas including accounting, finance, fundraising,
organizational management, public relations, strategic planning, business, or
law. If you or someone you know is committed to achieving the mission of the OI
Foundation please fill out a nomination
form. Nominations are due by April 30, 2014.
for the 2014 Volunteer of the Year Awards!
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 people living with OI. The Foundation recognizes
these great volunteers by presenting three awards to recognize their
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. Please submit your nomination
form to Jessica Finkel at email@example.com
by April 30, 2014.
Back to Top
From the Information Center
Rare Disease Day
On February 28th, the OI
Foundation celebrated Rare Disease Day! Rare Disease Day an international
campaign to raise awareness and education of rare diseases and how they impact
the lives of patients living with them. The theme for this year’s Rare Disease
Day was “Join Together for Better Care.” Events took place all over the globe,
including advocacy day on Capitol Hill. Social media was another huge aspect to
sharing awareness of rare diseases. Individuals and organizations shared videos
and pictures on the www.rarediseaseday.org
The OI Foundation was
involved in “Raise your Hands for Rare Disease Day”, an event to show
solidarity of those living with rare diseases, and we posted this picture on
the Rare Disease website and also on the official OIF Facebook page. The post
was one of the most viewed posts on the OIF Facebook page, reaching 3,576
people. As National OI Awareness Week approaches we will continue our goal to
raise awareness about OI with our [SHAREforAWARENESS] campaign. Our goal is to
reach 100, 000 people through social media before National OI Awareness Week
begins on May 3, 2014! The OI community has certainly been following the 2014
OI Awareness Week theme, Share your Unbreakable Spirit®….during the month of
February, we reached OVER 59,000 PEOPLE! We are more than halfway to our goal!
Terrific New Resource for Health Insurance Information
The open enrollment
period for the Affordable Care Act Health Insurance Marketplace closes on March
31, 2014. If you are looking for help in understanding the necessary and
complicated subject of health insurance, be sure to browse through the National Disability Navigator Resource
Collaborative’s website! Not
only does this site explain implementation of the Affordable Care Act, but it
also has a library of health insurance enrollment resources and state-specific
toolkits that are useful now and in the future.
Upcoming Support Group Meetings
OI Foundation support group
meetings across the country give people the opportunity to learn, get support
from new and old friends, and raise awareness about osteogenesis
imperfecta. The spring meeting season is starting. Several groups have
meetings scheduled for this month. In addition, many groups are planning
meetings and events during National OI Awareness Week, May 3rd-10th.
Listed below are a few of the upcoming OI support group meetings:
Tampa, Florida- March 29th
Massachusetts- March 29th and April 12th
New Mexico- March 8th and May 3rd
See the event calendar on
the website for details on meetings in your area.
Check out the Abilities Expo near you!
The Abilities Expo is
a commercial enterprise that hosts informative workshops and exhibit halls for
the community of people with disabilities, their families, caregivers, seniors,
and healthcare professionals. The exhibit halls are free to attend and
have a wide range of products and services- from personal care items to accessible
vehicles, and major home renovations. The Expo travels to seven cities
throughout the year- Atlanta, New York, Chicago, Houston, Boston, Los Angeles,
and the San Francisco Bay Area. Visit their website (www.abilitiesexpo.com) to see if an Abilities Expo is coming soon
Back to Top
OIF Advocacy Update
Regulations for Home and Community-Based Services Program Offers Greater
Autonomy, Choice, and Independence
The Centers for Medicare and
Medicaid Services (CMS) has published a Final Rule implementing several changes to
the regulations governing Medicaid’s home and community-based services (HCBS)
benefits. These critical benefits permit many persons with disabilities
to receive various long-term services and supports in their home or a
community-based setting so as to avoid institutionalization in a hospital,
nursing home, or other facility.
The Final Rule ensures that
state Medicaid HCBS programs are consistent with several important changes
enacted as part of the Affordable Care Act (ACA). Most significantly, the
new regulations define “home and community-based settings” and “person-centered
plans of care” in a manner that greatly enhances an individual’s autonomy,
choice, and independence, and better meets an individual’s personal
needs. The regulations go into effect on March 17, 2014.
CMS never finalized its
proposed regulations to implement 2006 statutory changes to the HCBS program
because the passage of the ACA in 2010 made many of the policy changes
prescribed in the proposed rules moot or irrelevant. Since 2011, CMS has
been working to complete new regulations that would implement the changes made
to the HCBS program by the ACA and to streamline and make more consistent the
various regulations governing the HCBS, which had not been updated
significantly by CMS since 1994.
The Final Rule implements
changes to the HCBS waiver program to require greater transparency and
consistency from states in amending and/or renewing their HCBS programs,
implements stronger requirements for states wishing to establish the expanded
HCBS benefit authorized by Congress in 2006, and implements certain
requirements for home and community-based attendant services put into place by
Read the full Final Rule report here
Back to Top
Osteogenesis Imperfecta Foundation
Home | Email
Preferences | Contact
804 W. Diamond Ave, Suite 210
| Gaithersburg, MD 20878
Phone: (301) 947-0083 or (800) 981-2663 | Fax: