Volunteer Arm for the Intracranial Hypertension Research Foundation
DONATE

HOME

ABOUT US

WHAT IS IH

SUPPORT

GET INVOLVED

CONTACT US

HOME

The Official Home of

The IH Brain Pain Team

Where to find us

Local Chapters

Our newest effort is here! You can begin registering your local support groups with us to be listed in the Support section. Want to form a support group? We have information in that section to help you form a group also. Drop us a quick note to let us know about your group today!

Announcements

World Rare Disease Day is February 29, 2012
ABOUT US

Supporters for the

Intracranial Hypertension Research Foundation

This is the official website of the team. This is the formal front door to the team. There is information about IH, support information, tips for how to get involved on this site.

The facebook page for the IH Brain Pain Team is for facebook fans to connect to each other. The page is avenue for team announcements and informal discussions between fellow IH patients.

The twitter id for the IH Brain Pain team is used to pass along all pertinent information relating to the condition, symptoms, and side effects. People that enjoy staying informed with the most up to date information and short discussions enjoy following the IH Brain Pain Team on twitter.

For those IH’ers that enjoy following blogs, the IH Brain Pain Team has several volunteers posting entries for the team’s blog. Perhaps following our stories will help other IH patients feel a connection and not so isolated.

www.ihaveiih.com is an online support forum. Connect to people who have the same worries and fears, by posting your stories, your feelings and your experiences. You can even come and have a chat with other members. The “I have IIH” support forum promotes a positive environment to help IH patients live a better life.

Currently, the IH Brain Pain Team’s youtube channel is a series of videos about intracranial hypertension. In the future, this channel will be used to pass along helpful information to IH patients from a doctor.

History: The IH Brain Pain Team was created in 2008 as a support mechanism for the Intracranial Hypertension Research Foundation. The majority of the research foundation’s time is spent overseeing studies and research. That leaves very little time to create the social network of supporters that all charities need to help build awareness and more funds. Hence, the IH Brain Pain Team was created. The team’s philosophy is “Together We CAN Make a Difference.”We have slowly grown to include a website, a facebook page, a twitter site, a youtube channel, a support forum and a blog. Each social media site serves a purpose distinct from the others. We have many team members reaching out to support each other through the various sites. We welcome all IH patients, family and friends to join the team in whatever fashion works best.

Blogger Mission: IH Brain Pain Team has committed itself to its role as the support group for the IHRF movement. We pledge to continue to encourage our members to raise awareness of Intracranial Hypertension around the world which will ultimately lead to the quest to raise vital research funds for the IHRF. The IHRF is the only research organization dedicated to finding a cure for IH.Our plan goes beyond the notion of the Cure, and tackles the most pressing issues that IH patients face every day. Although our ultimate goal is to help find a cure, IH patients of today need more than that. Newly diagnosed patients and families often feel very isolated. Our team has identified three priority areas on which to focus our work.Advocate for more effective treatments today. Advocacy starts with taking action in even the simplest ways. Urging congressional members to fund vital programs that ultimately help rare diseases is a process in which the IH Brain Pain Team is to remain active.Create awareness that IH is a very real and possibly more common disorder than currently believed. It is surprising to find how many health professionals are woefully lacking in the knowledge of IH. There are many stories of patients given inadequate treatment -- such as "it's just a headache", recommending psychological help, "just take these pills and it will go away", etc. The team will continue to spread information in as many ways possible, so that the term "Intracranial Hypertension" will become more common knowledge.Promote fund-raising for research. The IH Brain Pain Team is a group of individuals dedicated to raising awareness and funds for vital research. Rather than create a separate organization from the IHRF, the IH Brain Pain Team, instead, encourages all funds to be donated directly to the IHRF. This site is loaded with helpful ideas to raise funds to benefit them and we encourage individuals to do as much as they can to help the IHRF. Orphan diseases, such as IH, are often underfunded in the public sector. Therefore, we'll take steps as individuals to do what we can to help vital research continue!

Disclaimer for our Facebook Page:Welcome to the official fan page of the IH Brain Pain Team. Please visit our official website.Rules of EngagementThe goals of this page are to share information pertaining to Intracranial Hypertension, spread awareness of IH, support the Intracranial Hypertension Research Foundation, and engage in an open and respectful dialogue. To help accomplish this goal, we ask that you abide by the following guidelines:Open Conversation/Not Personal:This page is an open conversation between IH sufferers, their friends and family. The spirit of our page is to encourage support for each other, share methods of raising awareness, and help to promote fundraising efforts to benefit the Intracranial Hypertension Research Foundation. Comments of a personal nature regarding team members or other fans will be removed. Have a question for a specific team member? Contact them privately.Take personal responsibility for your comments, your username and any information provided. Be Respectful:Personal attacks or comments deemed offensive by any member of our community will not be tolerated. Inappropriate remarks and profanity will be removed.Solicitations or Advertisements:We do not allow soliciations or advertisements. Similarly, we do not allow agencies to be defamed or defrauded through this fan page. Comments suggesting illegal activity will be removed. Links to other websites are subject to removal.Disclaimer:All resources found through the IH Brain Pain Team's fan page are for informational purposes only. While the IH Brain Pain Team sometimes identifies links to other websites and medical publications as a service, it is not responsible for the content or any information obtained through these off-site links and publications. Medical and legal information found on the internet should not be a substitute for the advice of your physician or legal advisor.Contact Us:This page is administered by the IH Brain Pain Team. If you have any questions or comments, please post them here or contact us at IHBrainPain_live.com .
WHAT IS IH

What is Intracranial Hypertension?

Intracranial Hypertension is a painful disorder in which cerebrospinal fluid is exerting too much pressure on the brain. It is a life-altering neurological disorder that can cause vision loss, blindness and severe, disabling pain that often cannot be controlled. There is no cure. The human brain floats within the skull and is cushioned by cerebrospinal fluid (CSF). In simple terms, the CSF is produced and absorbed by the brain. When too much CSF is produced or not absorbed quickly enough the intracranial (within the skull) pressure rises (hypertension). The body continuously produces and absorbs CSF. An average adult will have their CSF completely repleneshed three to four times a day. It is an efficient production line in a healthy individual. When either an interruption to the absorption or overproduction of CSF occurs, painful Intracranial Hypertension occurs.IH patients have a variety of neurological symptoms. The most common complaints are:Severe headachesSwollen optic nerves (papilledema)Ringing in the earsNot all patients have similar symptoms. For example, headaches can occur with no papilledema or vice versa.The following additional symptoms can occur for IH patients, but it is a uniquely individual disorder. Some patients experience some, none or all of the symptoms.Nausea & VomitingNeck StiffnessDizzinessDepressionLethargyMemory IssuesExercise IntoleranceHeat IntolerancePain in arms, legs & backTingling in hands & feetSpinal Fluid leaks from noseChronic IH is treated with drugs and/or surgery. Sadly, no drug has been specifically created to treat IH. The first drug of choice is a diuretic called acetazolamide (Diamox). It is a carbonic anyhdrase inhibitor originally devised to treat glaucoma. Other similar drugs are sometimes tried for IH.If drugs fail to reduce painful symptoms or the patient's vision is threatened, then surgery is the alternative. This involves placement of a shunt which has a catheter to drain the excess CSF fluid to the body cavity where is it absorbed.Much more information about Intracranial Hypertension can be found at the Intracranial Hypertension Research Foundation's website at www.IHRFoundation.org.
SUPPORT

Information You Need
Local Support Groups
Online support
Support Downloads

Information You Need

Information you need when you have IH

Having IH is hard enough just dealing with the symptoms, but it doesn't end there. You have the cost of treatments, drugs and therapies, not to mention getting or keeping health insurance and other things. Eventually you may find that you need a little bit more help than you first thought.

Advocacy for Patients with Chronic Illness Inc , can help you with these things and more, and they are willing to give free legal insurance information and assistance where they can. These are the things they can help you with;

How to get your own medical records

How to get and keep health insurance

How to get health insurance coverage for particular treatments, drugs, and/or therapies.

How to get private disability insurance coverage

How to get Social Security Disability Income

How to assert your rights under the Americans with Disabilities Act

How to assert your rights under the Family and Medical Leave Act

How to ensure that schools accommodate students with chronic illnesses

REMEMBER THE BEST PLACE TO GET THE INFORMATION YOU NEED ABOUT IH IS ON THE IH RESEARCH FOUNDATION WEBSITE

Information

documents coming

in April 2011

Local Support Groups

Click on a Country or U.S. State below to find information on local groups
Support groups are a beneficial way for those diagnosed with Intracranial Hypertension to share with others who understand their unique situations. A group can help you fight the isolation that IH can cause. Sharing IH experiences with each other can help you to learn how to cope with chronic pain and discover that you are not alone. If you would like to join a local support group, contact one of the group leaders listed on this page. These support groups are not monitored or regulated by IH Brain Pain Group.It only takes two to start a support group! If you’'ve thought of starting a group, then go for it. Clicking the buttons below will give you helpful tips for how to connect with others, where you might meet, how often, and explains what a support group does.

Page 1

Florida

Florida Support Group Contact Information:

We're on Facebook! You can learn about meeting locations and contact information by clicking here .

Page 3

Florida

Information You Need

Local Support Groups

Online support

Support Downloads

Online support

We want to help you have a better IH life!

Having a debilitating condition like IH, can not only be devastating but isolating, which is why the IH Brain Pain Team have " I Have IIH " as our support forums. They offer you positive, constructive advice and solutions to help you have a better life with your IH.

There are support forums covering topics about and related to IH, where you can connect to others who feel and think the way you do, about this condition.

They want to help you to adapt and give you confidence and wellbeing by showing you how to focus on positive and productive ways of coping, wherever you are in the world.

What you will find...

The staff are friendly and helpful, and have either got this condition, or are closely connected to someone who has. They respond quickly to members posts, who, are treated individually and with respect. Their aim is to help you to develop strategies that will work for you on a daily basis.

Often those close to a sufferer can be overlooked, and find it hard too, if they don't have any one to talk to themselves, which is why Relatives, Partners and Friends of sufferers of IH are also encouraged to connect to one another, so that they can understand more about this condition, and to share their own experiences and feelings with each other.

COMMUNICATION

This is an important part of building a firm support structure. The more informed everyone around you is, the easier coping with this condition gets. Always keep informed and aware, and importantly, talk to each other!

Support Downloads

Helpful Guides to living with IIH

A Guide to IIH A New way of Life.pdf

A Guide to IIH Talking to your Doctor.pdf

A Guide to IIH Talking to your Neurosurgeon.pdf

A Guide to IIH Informing People About IIH.pdf

These guides have been written to give both advice and suggestions on these subjects, to help you with living with IIH. They are available for you to read, download and print. We hope you find them helpful. If there is a subject that isn't here, and you feel a guidesheet would be useful, email us at either ihbrainpainlive.com or ihaveiih_yahoo.co.uk

Make your IIH life easier with these handy logs

IIH Symptom log.pdf

Medication Log.pdf

Housecleaning Task List.pdf

Keeping a track of your symptoms is a useful way of keeping your Doctors up to speed with how you have been doing.

It will also help you to see any patterns when you have symptoms or when they get worse. A Housecleaning log, which can also be adapted for work and social life, can also help you to recognise any patterns. Once you do see a pattern you can make changes, so that you can manage your IIH and have more control in your daily life, enabling you to have a better and more productive life.

A Medication log can serve two purposes. IT can help you keep track of your medication so that you know you have taken it through the day, but it can also be helpful if you have any side effects because you can log them ready for when you see your Doctor.

Getting Started Getting startedGive your group a name. A simple professional name works best for the long run – such as Columbia Intracranial Hypertension Support Group. The title enables the public to identify the group in advertising. Find a location. Many hospitals are willing to lend a conference room for support groups. Most churches are willing to offer you a room; your city hall may have a room available; or perhaps your local library has a meeting room. If your group is very small, you can even get started by meeting regularly over a cup of coffee. There are many options available to you, if you take the time to call. Ask friends and relatives for suggestions on meeting places.Pick a regular date and time. It’s up to all of you as to how often. Some groups enjoy casual weekly meetings while others prefer to meet monthly. Be sure your chosen schedule is agreeable with the location that you have chosen.Spread the word. Many hospitals and doctor buildings in your area have kiosks with informational literature. With permission, you can put informational literature there advertising your group. Visit our tools section to send a request for customized collateral for your group. We'’ll be glad to help. You can also contact your local paper and ask if they will do a write-up on your new support group. You're providing a public service to the community and many papers have a weekly guide where you can advertise your group with the weekday, place and time. Lastly, remember to register your group right here with the IH Brain Pain Team. We’'ll be more than happy to add your group to the list of local support groups.

Information You Need

Local Support Groups

Online support

Support Downloads

Getting Started

Group Roles and Duties Group roles and duties:There are a few helpful roles required to keep a group working smoothly. These roles should rotate on a schedule.Chair: This role typically requires a 1 or 2 year commitment. • Selects the topic or guest speaker for each meeting. The chair does not have to come up with new themes for every meeting. A sub-committee can create a list of ideas for the year from which the chair can choose.• Gets to the meeting early to set up the room and greet arrivals (and any newcomers). Hanging a sign on the door helps people to find the room.• A signup sheet to gather names, addresses, and phone number at each meeting should be set out.• Manages the meeting. It is very easy for a group to talk the time away when having a good time, but not accomplish the plan. The chair must be able to guide the discussion back on target if it strays.Secretary:• Having somebody keep notes is vital. There will be many good ideas and follow-up duties. These can be quickly forgotten.• Mail a summary of the meeting to all the members afterwards. Both the attendees and those who missed the meeting will appreciate it.Refreshment Host/Hostess (optional):• Providing snacks and drinks is not necessary. This can lead to unwanted expenses by asking everyone to “pitch in”. It is more important to keep it simple. After all, it’s about getting together to share experiences and not about adding financial issues to the list of problems.• If the group would like to have coffee/drinks/refreshments available, then a host/hostess role is necessary. It could be as simple as getting to the meeting early to get a pot of coffee going before the start time.

Information You Need

Local Support Groups

Online support

Support Downloads

Getting Started

Meeting Format What's the usual meeting procedure?Support groups works quite well when a combination of meeting styles are planned. Alternating guest speaker meetings with discussion topics keeps the interest level high. Discussion Format1. The group chair usually picks the discussion subject. It is very helpful to the chair to have an idea meeting once a year to form a list of topic suggestions. The subjects can be issues such as patient/doctor relationships, efforts and frustrations of living with a disability, feelings of isolation, depression and many more ideas.2. The group leader opens the meeting by introducing him/herself and asks if there are new members. If so, the leader will ask the new members to introduce themselves and what brought them to the group. First-time attendees need to feel as though they are included. Allowing someone to share is important, but NEVER force someone to speak if he/she is uncomfortable about it.3. After introductions, the discussion can begin. Encourage everyone to contribute. Additionally, the chair will need to stop the conversation from being monopolized by one or a few.Although discussion topics are chosen ahead of time, it is important to be flexible. A member’s personal well-being is the most important. If someone is having a particularly difficult time with something, they need to be free to talk. Speaker Format You will find that healthcare specialists such as doctors, nurses, and therapists are willing to speak to your group. Once again, an annual brainstorming meeting is helpful to create a list of suggested guest speakers will be helpful. The chair will choose from the list to invite a guest speaker to a meeting.The speaker is introduced by the chair after new members have been introduced. Remember to leave time for a question and answer period at the end. A thank you note to the guest speaker is in order afterwards.

Information You Need

Local Support Groups

Online support

Support Downloads

Getting Started

Support Group Tips Helpful Tips:Your leader must always be in control so no one is taking over the whole meeting. People will tend to drift away from a support group that continually strays off topic for long periods. Try to keep it down to a minimum. Learn to know when you need to move on to the next person or change the subject. A simple question to the group can often redirect things.Have more than one member ready to lead the meetings. The chair should be free to miss an occasional meeting without worry. Confidentiality is a must! Whatever is said within the group needs to stay within the group. Take your turn as group chair or another role. Being involved helps to reduce your sense of isolation that comes with a rare disease.Nobody in the group should ever give medical opinions. Leave that to the doctors.Leading a discussion does not mean a lecture. Asking open ended questions keeps the conversation flowing. Remember to include everyone.Always have a plan B in place. Sometimes a topic just doesn'’t go over as well as expected. It’s alright to ask the group for a consensus on changing the plan and choosing another discussion topic from your list. Keep it simple. Trying to discuss too many things at once can overwhelm the group. For example, there are a lot of different types of shunts and makers. It may be too much information to cover in one meeting. You may have to spread out such details over several meetings.

Information You Need

Local Support Groups

Online support

Support Downloads

Getting Started

GET INVOLVED

IDEAS

TIPS

TOOLS

FAQs

VOLUNTEER

CHEAP CLICKS

ADVOCATE

EVENTS

IDEAS

Looking for ideas on how to raise money for vital intracranial hypertension research? A few ideas are below. For tips on how to go about raising money, check our tips page. Need help? Recruit volunteers to help your effort. Use a site such as www.signupgenius.com to identify the type of help you need. Identifying roles and duties helps to gather more volunteers for your event.
A-THONS AND TOURNAMENTSAny event where participants raise money from individuals who either pledge to give a set amount of money for activities performed during a set time or make a contribution to the organization in honor of the event. Someexamples:• Run/walk-a-thon• Dance-a-thon• Bike-a-thon• Bowl-a-thon• Read-a-thon• Skate-a-thon• Rake-a-thonTOURNAMENTS:• Golf• Softball/Baseball• Basketball• Soccer• Tennis• Volleyball• Alumni sports (Ask your high school or college to see if an alumni sports event can also be a fundraising event to benefit IHRF.)AUCTIONSEvents where people try to outbid one another for donated items. Here are three common types:1. Traditional Auction with an Auctioneer: People are given numbers and as the auctioneer calls outitems, as peoplewant to place a bid, they hold up their number. Whoever bids the most money wins the item.2. Silent Auction: Items are arranged around the room and people place bids in a box, without knowing what anyone else bid. After a pre-detremined amount of time, organizers go through bids and contact the highest bidder.3. Winning Ticket Silent Auction: Items are arranged around the room as in the silent auction. When bidders enter the room, they purchase whatever amount of tickets they wish. The tickets are then placed in containers next to the desired item- bidders can put in one ticket or many tickets. After a pre-deterdetermined amount of time, organizers will draw one ticket from the container and the drawn ticket is the winner.RAFFLESSeek contributions and/or donations of goods and services from local businesses. Make raffle tickets with room for people to provide their name, phone number and address for people to sell. At a pre-arranged place and time, a drawing will be held. Gift baskets, made up of donated items, can also be raffled off.EVENING OUT AT YOUR FAVORITE RESTAURANTSpeak to the manager of your favorite restaurant and ask if the restaurant would be willing to donate a percentage of the total receipts on a particular evening (or for a particular meal).Then, invite friends, family, co-workers, etc. to come and eat on that day (or for that meal). This can also be combined with other ideas, like a raffle or auction. Variations on this theme: ask the restaurant or a chain of restaurants to donate a percentage over a given time period (i.e. for a week, a month) and place placards on tables to tell customers about chronic intracranial hypertension and the fundraising effort.PERFORMANCES OR A CONCERTLove classic rock or ballet? Or photos? Arrange a dance performance or a concert of your favorite local bands. Have a photo contest, charge a fee to those who want to enter their pics and then have a party displaying the winning photos.ARE YOU CRAFTY?Make something! Ideas include bracelets, earrings, candles, pottery, soap, photographs, baked goods, chocolates and more. Sell online at eBay, at an event, or ask local businesses in your town to help sell your creations and donate the proceeds to the Foundation.PANCAKE BREAKFAST/SPAGHETTI DINNEROr a Southern barbecue, a tea party or even Dim Sum. Whatever your tastes may be, seek out grocers, restaurants and drink distributors in your community to help provide food and drinks. Charge per person fee.THEMED PARTIES OR DANCESOnce you have decided on a theme, ask local businesses to support your cause by donating appropriate items such as decorations, food and beverages. Some ideas:• Welcome to... (your favorite destination or city)• Article of Clothing Party (i.e. hats, bowties, glasses, Christmas sweaters)• Beach Party (variations: Beach Boys party; Hawaiian luau)• Holiday Party (i.e. Halloween, Fourth of July, Christmas)• Costume Party (variations: dress as a celebrity; award prize for best costume)Other Fundraising Ideas• Jeans Day: Pay $5 to wear jeans to work• Recycle Cans: Keep an extra trash can in the break room for cans only• Concession Stands at Little League games• Loose Change: Put containers out at retail businesses for loose change• Jail and Bail: Arrest locals who have to raise money before they get paroled• CEO/Costume Pictures: Charge $5 to have a picture made with your CEO• Softball Tournament: Charge an entry fee for each team• Baskets (Theme) Auction: Put together theme baskets to be auctioned off• Dunk Tank: Get local celebrities to be dunked• Parents Night Out/Christmas Shopping for Parents: Charge parents for babysitting• Pampered Chef Party, Tupperware, or Partylight: Donate a portion of the sales• Office Easter Egg Hunt: Charge to hunt eggs at work - look for the prize egg• Car Wash• Letter Writing: Write letters to everyone on your Christmas card list• Book Sale: Have a used book sale at work or in your community• Silent Baked Auction: Have a silent bake auction for a sweet fundraiser• Talent Show: Charge admission for a No Talent Show• Crafts Auction: Make and sell all kinds of crafts• Yard Sales: Have a community wide sale• Garage Sales• Window Washing: Wash car windows at the bank drive through• Pamper Yourself Night: Slumber party for women only! Charge $10 to attend• House Cleaning: Clean houses for donations• Taking Care of Pets: Charge to take care of someones pet while they are away• Hang Peoples Christmas Lights: Charge for hanging them and taking down• Gift Wrapping: Set up a Christmas package wrapping station at a mall for donations• Personal Shopper: Charge to do shopping/errands for someone• Take Pictures with Santa: Take donations for pictures with Santa• Skate-A-Thon: Host a special night at a skating rink• Face Painting: Charge for face painting at a community event• Chili Cook off: Charge entry fee and for samples• Hula Hoop Contest: Great for kids AND adults! See who can go the longest• Ice Cream Social: Charge admission to sample this sweet treat• Lemonade Stand: Set one up on a hot summer day!• Candy Gumball Machine: Put this in your office for everyone to purchase• Most beautiful baby contest: Vote with money donations for the cutest baby• Dance Contest: Charge an entry fee to participateAnother option:Make your own online fundraising page for IHRF at www.Firstgiving.com

TIPS The Intracranial Hypertension Research Foundation has created a very helpful packet of information to help you on your way with creating an "IHope for a cure" fundraiser event. Please send a note and we'll gladly have a packet sent to you. Simply click the contact button above. Thank you!

9 Steps To A Successful Fundraiser
1. NAME YOUR EVENTMake sure that your event name is short, easy to remember and descriptive. Contact the IHRF for ideas.2. SET THE DATE AND TIMEChoose a date far enough in advance to give you time to prepare. Be aware of conflicting local events and holidays. Larger events take at least six to nine months to plan and execute.3. CHOOSE A LOCATION Ask various clubs or organizations if they have space available to rent or would be willing to donate their space. Check out your local town halls, galleries, schools, churches, restaurants and catering halls. Be sure to book the venue early and ask for a discount. You may need to contact local law enforcement if you are planning a large event at a public venue. Also determine if you need security, liability insurance or any permits.4. SET A BUDGETCreate a budget that will keep costs at a minimum. Estimate income from attendance as well as costs of decorations, refreshments, mailings, and more.5. CREATE A TIMELINEPrepare a general timeline for the event, especially if you are planning something large. A timeline provides an outline of what needs to be accomplished in the months leading up to the event and on the actual day of the event.6. GET HELP FROM VOLUNTEERSAsk your friends, family and other contacts to volunteer at your event. Delegate responsibilities and create committees if your event needs them. Hold periodic meetings to monitor your progress. A very hand tool for recruiting volunteers can be found at www.signupgenius.com .7. PROMOTE YOUR EVENTGet the word out so lots of people attend your event. You can use any of the following promotional tools:PostersWrite letters and e-mails to friends and amilyAds in local publicationsNotices in your community news papers calendar of eventsWeb site or blogTell your friends on Facebook, MySpace, LinkedIn, and TwitterContact the local mediaInvitationsReminder: Make sure all promotional materials and Web pages that include IHRFs name and logo have been reviewed and approved by the Foundation.8. GET EXTRA SUPPORTAsk local businesses if they would be willing to provide monetary donations or in-kind gifts such as printing, giveaways, auction items, food and more. Or they might display your event flyers at their stores. In return, you can list their business name and logo in your event program. For donations, be sure to keep a list of the donors contact information and company, type of donations, and cash value to forward to the Foundation.9. DONT FORGET TO SAY "THANK YOU!"Regardless of the type and size of your fundraiser, it IS Important to say thank you to everyone involved. While IHRF will send letters for tax purposes to those people and companies who've donated to your fundraiser, sending a short thank you letter is an easy way to make sure you've also acknowledged their support. Let them know how much money was raised by the event, especially if they made a financial contribution or donated a prize.

TOOLS

Fundraising Tools & Resources

Feel free to take advantage of our fundraiser literature in your effort to benefit the Intracranial Hypertension Research foundation. We will customize our templates for your project. Simply send a request to get things started. Thank You!

We have a large variety of templates from which to create supporting materials for your benefit for the IHRF. The examples below are for a simple campaign called "1, 2, 3, 4, What are We Fighting for?". We have customizable posters, recruitment letters, counter cards, and thank you notes. In this example, posters and cards can be left at a local store to solicit donations from patrons. A sample letter is available to help recruit a business in the community. For your own personalized copies of these documents or to create new documents for your own idea, send a request using the form to the left.

$1 $2 $3 $4 What are We Fighting For? Event Examples

Sponsored Silence Examples

FAQs

FUNDRAISING FAQs
There are many ways to raise awareness of chronic intracranial hypertension (IH) and aid in the search for a cure. Holding a fundraiser to benefit IHRF can be an easy and rewarding experience. Your efforts help those struggling with chronic IH, by raising money that makes IH research possible. A fundraiser also provides an excellent opportunity to educate and involve your family, friends and community in raising awarness of this painful, life altering illness.Fundraisers can take all sorts of forms --fundraising activities, workplace giving, online fundraising and more. Be creative and make it fun! (Some fundraising ideas are on the idea page.)WHERE DO I START?Most people who fundraise for IHRF are first-time fundraisers, so don't worry if you have questions. IHRF volunteers are here to help you as much as possible, so please email or call us if you have questions or need assistance. Please know that your activity must be approved by IHRF before you actually begin fundraising. You can contact us at 360.693.4473 or email us at contact_ihrfoundation.org for further Information and to receive an application form.HOW DO I PLAN A FUNDRAISER?Successful events, whether large or small, require good planning. Try to start as early as possible and think carefully about the timing and a place to hold the fundraiser. Remember that larger events need more time to plan and promote. More tips on planning a fundraiser can be found on the fundraiser tips page.I HAVE NO IDEA WHAT ID LIKE TO DO. DO YOU HAVE ANY FUNDRAISING SUGGESTIONS?Yes! Check out the list of ideas the Fundraiser Ideas page.IS IHRF A SPONSOR OF MY FUNDRAISER?While we provide guidance and assistance to help you plan your fundraiser, IHRF does not sponsor fundraising events organized by third-parties. This means event organizers are responsible for obtaining all permits, as well as liability insurance to cover the event, if appropriate. IHRF is not financially liable for the promotion or staging of third-party fundraisers.WHERE DO I SEND THE MONEY I RAISE?Checks and money orders, made payable to IHRF can be mailed to:Intracranial Hypertension Research Foundation6517 Buena Vista DriveVancouver, Washington 98661You can also use your credit card or PayPal to forward funds that you've raised. If you would like more information about these options, please send us an email at contact_ihrfoundation.org or call us at 360.693.4473.
CAN I USE THE IHRF LOGO?If you would like to include the IHRF logo or use our name in your fundraisers artwork or promotional materials, you will need to have approval from IHRF for any such reference/s prior to printing and distribution.WHAT ABOUT TAX DEDUCTIONS?Under U.S. law, donations of goods or services made to a fundraiser that benefits a 501(c)3 nonprofit organization like IHRF are tax-deductible. This includes donations (i.e. prizes for raffles or auction items), as well as in-kind donations such as printing services to make fundraiser flyers. Donations of money made directly to IHRF are also tax-deductible. We ask you to keep a list of people who have donated to your event, their specific donations and the cash value of their donations, so that we may be able to properly acknowledge their donations after your event is over. Our thank you letter functions as a receipt for tax purposes.WHAT ISNT TAX DEDUCTIBLE?Tickets sold or entry fees for fundraisers in which someone is receiving something in return for entertainment, a meal, entry in a competition are not tax-deductible. Goods for sale, such as cakes at a bake sale, raffle tickets, or items bought at an auction, are also not tax-deductible.HOW DO I GET THE PRESS INTERESTED IN MY EVENT AND IH AWARENESS?Fundraisers are a great way to generate public awareness about chronic IH. So how do you get media coverage? The first step is to contact IHRF; we can help you write a press release. We also provide media interviews. Here's a general plan:SELECT THE TYPE OF MEDIA - Depending on the size and type of your event you need to choose an appropriate media outlet to help get coverage. This may include local newspapers, radio stations, magazines and television programs.WRITE A PRESS RELEASE - Thoroughly familiarize yourself with the types of stories that your chosen media outlets report on before you start writing your press release.CONTACT IHRF - Remember to send your press release to IHRF for approval prior to sending it.WHAT ADDITIONAL SUPPORT CAN IHRF GIVE ME?We can supply brochures, fact sheets and newsletters to support your fundraising efforts. Please only request materials that you are sure you will need, in an effort to keep our printing costs as low as possible. We are happy to answer your questions, offer suggestions and act as a general resource.For more informationon fundraisers, please contact us.The Intracranial HypertensionResearch Foundationcontact_ihrfoundation.orgTel: 360.693.4473

VOLUNTEER

Volunteer

We always have team members working on a variety of projects to help raise awareness and/or to raise funds for the IHRF. Stay tuned for big plans coming for 2011.

CHEAP CLICKS

Cheap Clicks

The IHRF toolbar is free to download and allows you to raise money for IH research every time you search or shop online! Once added to IE or Firefox, each time you shop at more than 1,300 stores (from Amazon to Zazzle!) a percentage of your purchase will automatically be donated to IHRF- at no cost to you (and you may even save money as the toolbar provides coupons and deals as well). The toolbar also has a search box and each time you search the Internet, about a penny is donated to IHRF.

Please download the toolbar right now by following this link-

http://www.goodsearch.com/toolbar/intracranial-hypertension-research-foundation-ihrf

Caitlyn's Wish by Victoria Taylor is a touching story about a young girl whose father develops a rare disorder. Ten percent of the proceeds of this book will be donated to the IHRF! To read more about the book and order copies, please click below.

Caitlyn's Wish

Firstgiving is an easy way to generate funds for the IH Research Foundation. It is a website that lets you create a fundraiser page that directs donations to the IHRF no matter what currency is involved.

ADVOCATE

IH Advocacy
Ad-vo-cate: to speak or write in favor of.
TAKE ACTIONThere is a newly formed Congressional Caucus that focuses exclusively on the brain and its disorders and promises to have significant impact on national policy. Please urge your congressman to join the caucus today through http://capwiz.com/americanbraincoalition/issues/alert/?alertid=15125831

HELP WITH ISSUES

The IHRF is a member of the American Brain Coalition. The ABC organization promotes issues relating to all things "brainy." The ABC often posts action items that benefit research organizations such as the IHRF. To see the latest issues by the ABC, click the above button.

RAISE AWARENESS
The Brain Pain Team is on Facebook! Go to our page and join the group.

IH Awareness Video. January 2010.wmv

Facebook

EVENTS The No More Pain Group will be holding its 2nd Annual Fun Day and Walk for a CURE. Our goal this year is to raise $5000.00 to help support medical research for a rare disease.Intracranial Hypertension (IH) affects thousands of people yet there is no cure for this disease. The No More Pain Group was started to help find a cure for my daughter, Carla, who has Pseudo Tumor Cerebri with Papilledema which is a form of IH. All proceeds from the Fun Day and Walk will go to the Intracranial Hypertension Research Foundation to help find a CURE. We need your help to make this event a success.The No More Pain Event is part of the Race Around the World in 30 Days global event sponsored byt the IH Brain Pain Team. Thank you for supporting the Intracranial Hypertension Research Foundation!

CONTACT US

The Intracranial Hypertension Research Foundation can be reached at:

Intracranial Hypertension Research Foundation

contact_ihrfoundation.org

Tel: 360.693.7062

Web: www.IHRFoundation.org

Disclaimer: The following resources are provided for informational purposes only. While the IH Brain Pain Team has identified these links to other web sites and medical publications as a service, the IH Brain Pain Team is not responsible for the content or any information obtained through these off-site links and publications. Medical and legal information found on the Internet should not be a substitute for the advice of your physician or your legal advisor.

This Website was created usingwix.com Start Website builder