2015 Family Conference – Last Minute Facts!

Can you believe the conference is just over a week away!

Here are a few answers to the most common questions:
The entire three day event is free!

Friday’s Meet and Greet and Sunday’s Closing Ceremony will provide light dinners. Saturday Symposium at Texas Children’s will have breakfast and lunch.

Childcare is provided for Saturday’s symposium only. A huge thank you to Texas Children’s Hospital for offering trained staff to watch our children on Saturday. It is very unusual to have daycare provided at events like this. Friday’s Meet and Greet and Sunday’s Closing Ceremony will have a craft table with volunteers to help keep the kids busy, but they will not be responsible for caring for the children. Please keep an eye on your children during these events. The workshops on Sunday are for the adults only.

The Houston Marriott Medical Center provides a free shuttle for a two mile radius from the hotel. However, they do not provide a shuttle from either airport back to the hotel. 

Please let us know if you have any questions. See you there!
Kathy Jensen and Lisa Soeby

Video Blog

This video blog was made by Carrie Fulcher in the UK. Thank you Carrie.

Fun Fact Friday – Will You Be There?

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by Kathy Jensen

Today, I want to talk to the people that are still on the fence and offer some additional reasons you may want to attend the 2015 Hypothalamic Hamartoma Family Symposium. We want you to know that the symposium will be recorded and posted on the Hope for HH website as soon as it is available so that you will have access to all of the presentations even if you are not there. In that way, we are trying to reach as many people as we can and completely understand the time and financial burdens that affect everyone when it comes to travel. However, the symposium is only half of the story.

By attending, you have will the wonderful opportunity of talking with other families and patients with HH. Our physicians are amazing, but they do not live with HH, and thus don’t always understand all of the quirky traits that families experience living with it. I have been incredibly blessed with the chance to talk to a few of the families. I have learned to laugh with my son when he has a gelastic seizure so he does not feel sad because I am sad, that when […]

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Finally Feeling Complete

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by Carrie Fulcher

After our first fundraising event as Hope for HH UK I cannot stop thinking about how good it feels to be supported by such loving and caring people. All my friends and family have watched my journey struggling with a Hypothalamic Hamartoma. They have recognised how difficult the last couple of years have been for me since undergoing unnecessary surgery. I could have let my misdiagnosis get the better of me and for a while it did but I didn’t want this to be the case forever so I had to take control. There was no way I was going to let this unfortunate situation define who I am as a person.

I started to have an overwhelming feeling of wanting to make changes in the UK as currently there is a lack of knowledge about this condition. I wasn’t entirely sure of the direction I wanted to take but after teaming up with some amazing mums who have to watch their children battle with the condition I knew exactly what had to be done.

I watch Faith, a 7 year old little girl suffer daily with her seizures, precocious puberty and emotional difficulties. Also, […]

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Ideas for Fundraising for Hope for HH

by Angela Donn

The Spring and Summer Seasons are a great time to get together with others and enjoy life. One way to feel great is to give. Last year, with tremendous help from Eli’s dance company, a quarter auction was held to raise money for Hope for HH. Here are some of my notes on how you can create a successful fundraiser and feel good about giving back.

There are so many ideas for raising money- like on-line auctions, fitness walks, 50/50 raffles, March Madness Brackets 50/50 tournament, car washes, even asking families to donate instead of giving birthday presents and being over-run with too many toys! Some schools will allow students to pay for a “dress down” day where they donate $2 to dress out of uniform or wear something silly. Have a game night where families donate $5 to play board games one night. Hold a yard sale with neighbors and donate a percentage of the profits. Hold a backyard outdoor movie night and charge an admission fee. So many creative ways to raise some funds!

A quarter auction is a fun way to bring vendors in to sell their wares while donating products to […]

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Family Conference Fun Fact Friday #4

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We are excited to bring you more news about the Hope for Hypothalamic Hamartomas Family Conference which will be held July 10-12 at

Texas Children’s Hospital – Pavilion for Women 6651 Main St Houston, TX 77030

Things to do while in Houston! Here are just a few things to do near the Medical Center-

Houston Zoo

Hermann Park

Houston Museum of Natural Science

Museum of Fine Arts Houston

Children’s Museum of Houston

This site has the top 10 things to do around the Houston area-

Top 10 things to do in Houston

It will be hot and humid but there are plenty of indoor options. This is going to be an amazing weekend filled with fun, learning and friendship. Now is the time to sign up and reserve your hotel!

Registration

Family Conference Fun Fact Friday

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Let’s talk travel! The conference and hotel are in Houston at the Medical Center. This is located south and a little west of downtown Houston. This area contains over 18 hospitals in a very small area. There is almost a hospital on every block! For someone that has driven in both Phoenix and Seattle I felt the area was a little confusing and very busy. I have heard some from the east coast felt the area was normal traffic and not too difficult. All depends on your comfort level. The Marriott at Houston Medical Center offers a complimentary shuttle within a two mile radius. Texas Children’s Hospital and the Marriott have parking available for a fee.

If you are flying in, there are two choices depending on which airline you have booked with; Bush International Airport (IAH), 23 miles north, or Hobby (HOU), 14 miles east. You can take a taxi, super shuttle, or rent a car to get to the Medical Center area. Once you are there, you can walk to the conference from the hotel, one block away. If you prefer, inside bridges are available that will take a little longer, but keep you out of the heat.

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Family Conference Fun Fact Friday

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Where to stay? We have a small block of rooms reserved at the Houston Marriott Medical Center for 81 USD a night. Friday and Sundays’ events will be at this hotel. The symposium is located just a block away at the Women’s Pavilion at Texas Children’s Hospital.

Please reserve your room soon. We may have the option to increase this block if needed depending on hotel availability, but the longer we wait the less likely they will be able to accommodate us. Some of the rooms have a pass through door so you may connect two rooms for larger families. These are also limited and you will need to contact the hotel itself at 713-796-0080 to check for availability.

The Marriott has two restaurants on site. They are also offering a discount coupon per person for the breakfast buffet at 15 USD for adults and10 USD for children.

For families that do not handle the heat well, there is a way to stay indoors, traveling through the sky bridges. It is a little longer walk, but I am sure it will be cooler. There is also an indoor pool to help cool you off and burn some of your children’s […]

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Please Participate in the Rare Epilepsy Network (REN) Registry

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by Ilene Miller

Some of you may wonder why I keep pushing for the Rare Epilepsy Network Registry (REN) so I wanted to share a more complete reply.

My son Mark who just turned 13 also has HH. He was diagnosed a age 5. I live in Bethesda, MD and am an attorney by training. My husband is a surgeon. We helped found Hope for HH with Lisa Soeby and others because until then there was no place to go for trustworthy medically accurate information about HH diagnosis. The foundation works with a board of Medial Advisors from around the world that specialize in HH.

One of the biggest issues we face in seeking treatment is that HH patients and doctors are dispersed around the world. It’s rare for a doctor, unless they are at a specialized center, to see and treat even one HH patient and even more rare for that doctor to see multiple HH patients. Thus, there is a great deal of variability in the treatment of HH patients. In addition, any lessons learned treating an individual patient is not as likely to be shared with other doctors. Questions such as: which surgeries are most successful? who […]

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Rare Disease Day February 28

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by Katherine Busby

Today is Rare Disease Day. It’s the day to recognize all those thousands of diseases that largely go unnoticed, diseases that receive little funding to researchers from drug companies and from the government because the patient population isn’t big enough to make it cost-effective. Collectively though, thousands suffer from these diseases and with the help of determined patients and parents, the internet, social networking, and some of the bigger support/advocacy groups that encompass many different rare diseases, changes are increasingly being made. Hypothalamic hamartoma is what Ezri has and is one of these (ultra) rare, and many times catastrophic, disorders. It is amazing to see the increase in treatment options and improvement in prognosis that have occurred over the last 15 years due to the acceleration of information exchange. Hopefully the research in my future will help contribute to many more great changes for patients of rare disorders!