12th National Conference: Tips on how you can afford it!
Posted by tom on May 7, 2012 · 5 Comments
The National Conference on Hydrocephalus is our biennial gathering to self-educate and make or renew connections. Join doctors, nurses, parents, children, people living with hydrocephalus and people affected by it, as we celebrate our community.
While we strive to keep costs down for attendees and provide some financial aid for registration, there are other costs to consider, such as airfare and accommodations. Because of the chronic nature of hydrocephalus, many of us struggle to make ends meet. So we have put together a tip sheet to give you ideas on identifying sources that might provide financial assistance.
CLUBS/ASSOCIATIONS:
It often pays to solicit professional or charitable organizations. Consider non-specific organizations such as the Elks, Kiwanis and Rotary clubs; regional groups, like the Native Sons of the Golden West; and historical, veteran or recreational associations, such as the Daughters of the American Revolution, the Veterans of Foreign Wars and the YMCA. These large organizations often promote raising money for worthy causes, including those involving chronic illness.
Here is a list of clubs and organizations to get you started. Keep in mind that these usually have a local chapter, and it’s best to deal with them at that level.
www.kiwanis.org
www.elks.org
www.lionsclub.org
www.mooseintl.org
www.rotary.org
www.nsgw.org
REGIONAL CENTERS
Regional Centers are also a great resource for parents. These are state-run organizations set up to assist parents with children who are at-risk developmentally. As the conference is geared to providing information for these children, Regional Centers are another potential source of financial assistance.
LOCAL FAMILY RESOURCE CENTERS AND NONPROFITS FOR MEDICAL CONDITIONS
There are many conditions that are concomitant, related or causal to hydrocephalus. Consider approaching a nonprofit related to this other condition to see if it provides funding to promote better education or quality of life.
TREATMENT CLINICS
Some clinics provide grants to further the education of patients with chronic conditions.
CREATE YOUR OWN OPPORTUNITY
Create an event and invite friends, family and people from your community. Let them know what the funds raised will be used for, why it’s important and how much their contribution is appreciated.
Perhaps a community group, like the local chapter of the Boy Scouts, would be willing to assist.
FINANCIAL AID:
Limited financial aid is available to members of the Hydrocephalus Association to cover conference registration fees. Financial aid is awarded based on need. Fill in the financial aid application form and email it to us at info@hydroassoc.org by May 20, 2012.
To find out more about the Conference and to register, click here.
I have two adopted daughters with Hydrocephalus. My younger one also has Macrocephaly, so her head is larger then many adults. She desperately wants to learn to ride a bike, but we have been unable thus far to find a helmet large enough to fit her head. Do you have any recommendations as to where we might be able to find her one, & hopefully without breaking the bank? Her head measures 62 cm.
Thanks for your help.
Susan – I have a really large head as well due to hydrocephalus. I’m also an avid cyclist. The best way for me to find a helmet that fit was to go to a professional bike shop and try a bunch on. I’ve worn both this Bell one: http://www.bellhelmets.com/bicycle-helmets/road-race/bell-lumen-black-carbon-bicycle-road-race-helmet/ and also this Specialized one: http://www.specialized.com/us/en/bc/SBCEqProduct.jsp?spid=64166, both in a large. I like the Specialized one better because my head is more oval shaped than round. Definitely look for men’s, not women’s or even unisex. This coming from the kid who wore a men’s XL batting helmet in third grade softball
Unfortunately, you’re going to have to spend some money to get one that fits. But it might be worth it to make your daughter happy!
Just want to give you an INTERNET HUG, Susan. Your daughters are truly blessed to have such a caring mom!
I hope that having a sister who shares a medical condition will help each of them cope with feeling “different.”
Biking is such a great activity – for kids and adults alike! Good luck in finding helmets that FIT. (And BRAVO to you for not simply allowing your daughters to ride “unhelmeted.”)
I second the suggestion for a specialized bike shop. Our oldest son has Hydrocephalus and is 10 yrs old. We went to a bike shop and they were very accommodating, with a very large selection of helmets to try on. When none of those worked they ordered several more at no charge to us for him to try on. He ended up with a motorbike helmet in an adult size 2xL.
I am the only person in my family with Hydrocephalus.