Patient/ Caregiver Conference Guidelines

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Private Youth Ambassador Conference

 

Private Event for DYNA Youth Ambassadors

The DYNA Patient/ Caregiver Conference is a Private Event that is open only to current/active DYNA Youth Ambassadors and their families.

 

Purpose

The Patient/ Caregiver Conference offers informative medical and caregiving sessions as well as accurate and up to date information on the conditions.

The Patient/ Caregiver Conference provides opportunities to learn coping techniques.

The Patient/ Caregiver Conference offers DYNA Youth Ambassadors the companionship of understanding friends in a congenial, productive, supportive atmosphere.

The Patient/ Caregiver Conference promotes camaraderie, networking, and interaction among DYNA Youth Ambassador families and physicians.

 

About the patient/ caregiver conference

The Patient/ Caregiver Conference typically occurs over a three to four day time period in July.

An agenda is not released prior to the event and will be issued upon check-in to the hotel.

An event theme is announced at the beginning of each year.  Event activities often focus around this theme.

Multiple educational sessions are held that have a focus on the recovery process, coping skills, relaxation/stress reduction techniques, insomnia relief, living with dysautonomia, physical therapy/exercise, etc. The event closes with a fun Dinner-Dance.

One main highlight of the Patient/ Caregiver Conference is called the “Goofy Slipper Lecture on Dysautonomia.” This casual and informative lecture is conducted by a leading physician in the field of dysautonomia. There is often opportunity to interact with knowledgeable individuals and professionals and to gain up-to-date and accurate information on dysautonomia conditions. A tradition that started many years ago is that DYNA Youth Ambassadors create and wear silly looking slippers to this lecture (based on a new theme each year).  This tradition helps to create an atmosphere of fun and informality.  The Youth Ambassadors traditionally sing a song conducive to the event theme at the end of the lecture.

 

Who may attend?

This is a strictly private event open only to current/active DYNA Youth Ambassadors and their families.  This is not a public event.

No DYNA Youth Ambassador under the age of 21 shall be allowed to attend the Patient/ Caregiver Conference without their own parent or legal guardian.  Room sharing is not allowed and each family must reserve their own hotel room.

Youth Ambassadors must have symptoms well-managed and under good control in order to attend this event.  Youth Ambassadors who are still quite symptomatic (experiencing frequent fainting, frequent seizures, severe sensory regulation issues, wheelchair dependent due to unmanaged orthostatic intolerance, unable to stand, walk or climb stairs unassisted, dependent on Intravenous Therapy/Parenteral Nutrition, and/or are thus unable to self evacuate a high rise hotel via multiple flights of stairs) must wait until their condition is better medically managed in order to attend this event. 

 

I am still quite symptomatic, what should I do?

You must do what is best for your health!  DYNA holds this event every year so that you have hope for attending in the future when your medical condition is better managed (many people have waited years to attend).  Because the stress of the event and traveling can set dysautonomia patients back medically, we are strict about who should and who should not attend.  Hotel fire evacuation issues have also surfaced during past events which require us to take your safety into consideration as well as the safety of others. 

 

As a responsible patient, you must do what is best for your recovery process and safety.  It is absolutely necessary to make wise choices in order to move forward with recovery.   Attending this Conference when your body is still dealing with intense symptoms is not in your best interest medically and can set you back dramatically. 

For this reason, the attendance policy is firm and WE CANNOT MAKE EXCEPTIONS.

 

Is this event worth attending?

Yes – duh!  Many Youth Ambassadors and their families say this event is a changing point in their lives.  We think they are telling the truth.  They return year after year and travel great distances for a reason. 

 

Hotel information, dates and location

For event security purposes as well as the privacy and safety of our Youth Ambassadors while in the hotel, the DYNA organization does not publically announce the dates and location of this event on our web site.  That information is available to our members via our private Youth Ambassador Forum. 

We ask that all Youth Ambassadors respect this privacy for the safety and well-being of our many young female members and not release dates and location publically.

If you have questions you may feel free to contact our office.

 

Important notes

  • While DYNA can provide the experience, it is ultimately up to each individual and family to make the most of the event by networking, interacting and participating.
  • The health, safety and welfare of our Youth Ambassadors is first and foremost in our planning. Experience has taught us what works best during these events. Please respect the established guidelines, which DYNA’s Board of Directors and Medical Advisory Board have put together to benefit the DYNA youth – who are the focus of this event.
  • Before attending this event, all members and their families must review and agree to the Event Guidelines and make sure that they are willing to abide by them.
  • All attendees will be asked to sign an Event Agreement which includes a Behavior Agreement and a Photo/Audio Release Authorization. Consequences of violating the Event Guidelines can result in one or more of the following actions: warning, time-out, dismissal from activity at hand, removal of DYNA membership privileges and/or expulsion from event. Refunds will not be provided.
  • Due to the degree of illness associated with our attendees and the symptoms experienced, we do not endorse hotel room sharing with other families and other youth members. Past experience has proven this to be a mistake. Please attempt to get your own hotel room.
  • Hotel registration policies and age restrictions must be respected. All individuals in a hotel room must be confirmed with the hotel upon registration, and guest-per-room fees apply.
  • Parent(s) are responsible for their child’s safety at all times.
  • Parent(s) should not leave the hotel grounds without their child or children. Children are not to be left unsupervised.
  • Parent(s) must be available at all times in case of an emergency.
  • Disrespectful or disruptive individuals will be removed from the event.

  • DYNA has a strict "no-dating" policy among membership.  We are not a dating service and this event is not for such purposes.

  • Members may only bring family.  No boyfriends or girlfriends allowed.

 

Questions

Questions may be directed to the DYNA office [email protected]

 

Registration

PRIVATE EVENT: All attendees must be current DYNA Youth Ambassadors in good standing.

TERMS OF AGREEMENT: All attendees must read and agree to the EVENT GUIDELINES.

NON-REFUNDABLE DYNA REGISTRATION FEE: Members should refer to the private Youth Ambassador Forum for fee information, dates and location.

EVENT REGISTRATION DEADLINE IS FINAL. 

 

Necessary forms

There are 3 forms that Youth Ambassadors are required to submit to DYNA.  These forms are available for printing on our private forum.

FORM # 1 - DYNA REGISTRATION FORM

FORM # 2 - MEDICAL INFORMATION FORM

FORM #3 - EVENT AUTHORIZATION FORM

 

Youth Ambassadors should mail all 3 completed forms along their your registration fee to:

DYNA, Inc. Patient/ Caregiver Conference
1301 Greengate Court
Waldorf, MD 20601

 

Youth Ambassadors should refer to our private forum for additional Patient/ Caregiver Conference information and updates.

 

We regret that we are currently unable to offer DYNA members sponsorship to this event.

If you require financial assistance we suggest that you contact your local civic organizations/churches/synagogues.