Sarah Elisabeth Glassman

Sarah Elisabeth Glassman (NPA/B)
Jan. 30, 2007 - Aug. 30, 2010

With great sadness we pass along word of the death of Sarah Elisabeth Glassman, age 3 years, from the effects of Niemann-Pick Disease Type A/B (ASMD).

Sarah is survived by her parents, Aaron and Valerie Glassman of Norfolk, Virginia; her brother, Zachary; grandparents Dr. Myron and Nanci Glassman and Brenda Bowling; and many aunts, uncles, cousins, friends and admirers.

"Loved by all who knew her, delicate and tiny Sarah was an amazing inspiration. It was an honor to be with this little angel. She taught everyone the true value of each day on earth and gave us all so many happy memories."

In lieu of flowers, memorials can be made to the Edmarc Hospice for Children (www.edmarc.org) or the National Niemann-Pick Disease Foundation.

Aaditya Michael Dasgupta

Aaditya Michael Dasgupta (NPC)
Feb. 15, 2001 - Aug. 12, 2010

We sadly inform you of the death of Aaditya Michael Dasgupta due to Niemann-Pick Disease Type C (NPC), on August 12.

Nine-year-old Aaditya is the son of Aaditya Ravi Dasgupta and Tasneem Tankiwala of India, and the nephew of NNDPF member Duriya Lakdawala of Michigan.

A funeral mass was held on Saturday, August 14.

Our deepest sympathy to Aaditya's family and many friends.

To learn more about Niemann-Pick Disease and to join our Quest for a Cure, please visit the National Niemann-Pick Disease Foundation's Web site.

I Guess I cry when I'm happy

The Burzynski Clinic has been very kind to let me receive treatment and medication for

about 9 months without paying them yet. But, the time finely came when they said that

they couldn't do that anymore for me or the other patients. They need their money as

well. I have to pay for their services before they can ship the medicine. So, I have

been very concerned and worried about getting my pills. It costs $2,250 a month. I

ran out of one of them on Thursday and my main pills, Sodium Phenelbruterate, will be

done on Tuesday. We've been trying to get the funds together and still needed

$1,999.63. About 45 minutes ago, a very special person, actually people, put money

into my account so that I can order them on Monday and get them shipped one day mail.

I've cried ever since with joy and gratitude for this very special gift. It's a

sacrifice for them I am sure. Am I worth it? I guess so. I'm thankful for life and

the wonderful people in my life. My God bless them abundantly for their great

goodness to me.
p.s.-How do you stop crying?

Carnival Raises Funds in Memory of Karen Sullivan

Jason, Sarah and Abby Sullivan, ages 10, 7 and 5, respectively, organized and held a backyard carnival to raise funds for the NNPDF in memory of their aunt, Karen Sullivan, who died in 2004 as a result of Niemann-Pick Disease Type C (NPC).

After several weeks of planning, the children made signs and posters to advertise and invite their friends and neighbors to come for games, prizes, and food.

The whole family got involved as one grandma made funnel cakes and another ran the bean bag toss, while the two grandpas ran the golf game and served as the event photographer. The late-summer heat wave even broke in time for a perfect evening, and the neighborhood was very supportive, raising almost $500 for the fight against NPD!

Jason, Sarah and Abby are the children of Kevin and Jean Sullivan and the grandkids of Art and Nancy Sullivan of Chesterfield, Missouri. Nancy recently retired from the NNPDF Board of Directors and Art serves on the NNPDF's Finance Committee.

Thank you, Jason, Sarah and Abby, and the entire Sullivan family!

To see more photos from the carnival, and to read about other family fundraisers advancing the Quest for a Cure, visit the NNPDF's Upcoming Events page.

Berbagai Ramuan Untuk PASUTRI

Karena belum adanya pengalaman, tak pelak kepanikan seketika akan melanda pasangan muda bilamana salah satu dari keduanya ternyata memiliki kekurangan. padahal tak perlu risau atau berkecil hati, nenek moyang kita telah meninggalkan aneka resep untuk berbagai penyakit yang keampuhannya sudah teruji sepanjang jaman. dan berikut adalah kutipannya.




UNTUK MALAM PENGANTIN DAN AGAR PASUTRI SELALU MESRA

Lumasi Pisang emas dengan Madu, dan dimakan oleh keduanya. Lakukan setiap hari secara teratur.

MUAL-MUAL WAKTU HAMIL DAN PENGUAT KANDUNGAN

Bahannya :
- 1 sendok makan Madu
- 1/2 gelas air hangat

Cara membuatnya :
Larutkan Madu tersebut didalam air hangat, dan minum 3 kali sehari. lakukan sampai rasa mual itu hilang sama sekali.

UNTUK MENOPAUSE

Bahannya :
- 3/4 daun Pacar cina, dicuci
- 3 sendok makan Madu dewa
- 3 gelas air

Cara membuatnya :
Cuci dan rebus daun Pacar cina dengan 3 gelas air sampai tersisa 3/4. Kemudian saring dan dinginkan serta tambahkan dengan 3 sendok makan Madu dewa minum 2 kali sehari, masing-masing 1/2 gelas.

UNTUK CALON IBU YANG TERKENA VIRUS DARI HEWAN

Bahannya :
- 4 batang Meniran
- 4 gelas air

Cara membuatnya :
Cuci dan rebus akar, batang, daun dan bunga Meniran hingga airnya tersisa 1 1/2 gelas. Setelah dingin, saring dan minum 3x sehari sampai benar-benar sembuh. Jangan lupa, konsultasi secara teratur dengan dokter pribadi anda.

AGAR VAGINA BASAH DAN MENGGIGIT

Bahannya :
- 1 kg Salak
- 3 genggam daun Kemangi.

Cara membuatnya :
Kupas dan iris Salak tipis-tipis lalu jemur sampai kering. Cuci dan jemur daun Kemangi sampai kering. Tumbuk kedua bahan tadi sampai halus dan simpan dalam toples yang berbeda. Tiap hendak tidur, ambil masing-masing 1 sendok makan dan seduh dengan 1/2 gelas air hangat. Aduk sampai rata dan minum.

AGAR VAGINA BERBAU HARUM

Bahannya :
- 25 lembar daun Sirih
- 25 lembar daun Jambu biji
- 1 sendok makan garam beryodium
- 4 gelas air

Cara membuatnya :
Cuci kedua bahan tersebut diatas sampai bersih, kemudian semua bahan direbus hingga air tersisa menjadi 3 gelas. Gunakan air rebusan itu untuk membasuh Miss V 3-4 kali dalam sehari.

UNTUK KESUBURAN SUAMI

Bahannya :
- 8 batang Seledri,
- 1 hati Nenas,
- gula secukupnya.

Cara membuatnya :
Tumbuk batang Seledri sampai halus, dan parut hati Nenas. Kemudian campurkan dengan gula, aduk sampai rata, dan peras. Lalu minum airnya sebelum tidur.

UNTUK KESUBURAN ISTRI

Bahannya :
- 1 mangkok Tauge atau Kecambah
- 1 kuning Telur ayam kampung
- 1 sendok makan Madu hitam
- 1 buah Jeruk nipis
- garam beryodium secukupnya

Cara membuatnya :
Kecambah dicuci, tumbuk dan peras, campurkan dengan kuning Telur ayam kampung, Madu hitam dan perasan air Jeruk nipis serta tambahkan garam secukupnya. Aduk sampai rata dan minum sebelum tidur.

KISTA DAN KEPUTIHAN

Bahannya :
- 1/4 lembar daun Pepaya gantung,
- sengenggam daun Ceremai,
- 3 sendok Madu hitam,
- 3 gelas air masak.

Cara membuatnya:
Cuci dan tumbuk daun Pepaya dan Ceremai, lalu tambahkan dengan 3 gelas air masak. Aduk dan diperas serta tambahkan 3 sendok Madu hitam. Minum ramuan tersebut 3 kali sehari masing-masing 1 gelas dan sebagai catatan, sebaiknya, bulu disekitar kemaluan sebaiknya dicukur.

SAKIT SEWAKTU HAID

Bahannya :
- 1 gelas air Teh hangat
- 1 sendok makan air Kapur Sirih

Cara membuatnya :
Campurkan kedua bahan tersebut diatas, dan minum ketika haid terasa sakit.

DISFUNGSI EREKSI

Bahannya :
- 2 buah Cabe jawa
- 5 isi Kedawung
- 1 ruas Kencur
- 2 ruas Jahe
- 1/4 gelas air mendidih

Cara membuatnya :
Cuci Cabe jawa dan tumbuk lalu campurkan dengan bahan yang lain dan seduh dengan air mendidih. Kemudian peras dan saring selagi hangat serta tambahkan dengan 1 sendok makan Madu hitam dan 3 kuning Telur ayam kampung. Aduk sampai rata, dan minum menjelang tidur. Lakukan secara rutin 1 kali dalam sehari.

NNPDF~ Family Conference 2010 at OneTrueMedia.com

Make an on-line slide show at www.OneTrueMedia.com

Princess Monica Celebrates First Birthday!

The 18th Annual National Niemann-Pick Disease Family Support and Medical Conference was held August 5th through 8th, in Toronto, Canada.

One of many highlights of the conference was the "Princess Party" held in honor of the first birthday of Monica Taillefer, daughter of Heather Patenaude-Taillefer and Simon Taillefer of Quebec.

The party was complete with a tiara for Princess Monica, crowns for all the kids, cake, of course, and special appearances by Cinderella and Snow White.

For more conference details and a link to see dozens of great photos from the event, visit the NNPDF NewsLine page.

I'm crying

I got approved for Torisel! I'm sooo happy :) :) :) All the paper work was worth it. Now I can complete the treatment that Dr. Burzynski wants me to do. I'm crying happy tears.

What I do all day

It's 10:00 am and nothing is done. It's crazy. But then, I think about what I have

accomplished and really.....I've done a lot. So, I just thought I would share it.

I've called the Leukemia Lymphoma Society 3 times, trying to get the application taken

care of so that I can get some financial aid. Their fax machine wasn't working so

they are sending it to my daughters fax and she will send it to me, then I will fill

it out and attach the info they need and call my oncologist and see that he does his

paper work as well. I've called the Burzyski Clinic to make sure that they received

the two faxes sent to them regarding a plane flight and hotel. (My cancer friend from

Bosnia told me about two different charitable organizations that assist people in

Texas and I've been completing the paper work for them to get their help) I have

files of information and organizations and just laugh about all the paper work and

phone calls. But, it saves money and it helps me to live and it is truly a blessing.

I'm sitting here smiling and am ready to clean the house finally....until the fax

arrives from Maria.

Life is wonderful and I am looking forward to having our family over this weekend for

dinner and birthday celebrations.

New Product Announcement: Haulin' Hooks Delt-Belt

Have you ever try a new product and find that it worked so well it left you wondering why it took so long for someone to think of it? Bang out a set with this new Delt-Belt and you’re going be glad we did!

That’s because patented Delt-Belts bio-mechanical angled pulling straps and body hugging design eliminates the negative joint stresses common to Barbell and Dumbbell style Upright Rows. All that’s left is a silky smooth pull you’ve got to experience to believe! Combine that with our patented Super “J” Hook Dumbbell Speed Loader and 5 vertical Quick Change Hook Sleeves and you’re talking one sweet shoulder building tool!

The Delt-Belt also features a 500# load rated D-Ring so you can hook it up to any cable machine for dozens more exercise options. This is the perfect workout tool for Bodybuilders, Weightlifters, and Athletes.

Check out the video below for more information as to how to use this great product. To order this great bodybuilding tool please visit Unique Fitness Concepts

Enduring to the end of cancer

I was diagnosed with cancer (mantle cell non Hodgkin’s lymphoma) on my birthday, in

2009. After being told that if I was to receive the strongest chemo.. in the

hospital.. and bone marrow transplant twice, I would possibly live 3 years. So…. I

decided to go a non traditional, but medical way.

After much prayer, priesthood blessings, and study, I received the witness from the

Lord that I would be healed and was guided to know which doctor to go to. I am now in

partial remission. My oncologist who is working with this doctor in Texas, is amazed

and tells me to continue. It’s a miracle. Every ct/pet scan shows improvement.

But…..its not over yet…..I am still running the race and enduring to the end. Why?


Because I trust the Lord and I believe that He keeps His promises. If I had been told

that it was my time to die…than I would go forward and prepare for the next life.

But, mine wasn’t the case.

It’s been a fighting battle, and very expensive, but it is worth it. The Lord has

literally carried me much of the time and has given me the strength to go on. In one

of the blessings that I received I was told to study my scriptures an hour a day. I

have done that faithfully and kept a scripture journal. Without this, I would have

gotten depressed and probably given up. The scriptures fill me with the Spirit and I

have received hidden treasures of knowledge along the way. Prayer has also been a

great strength as well. Also, going to the temple I have received revelation and

guidance. I know the Lord blesses us as we pursue our personal journeys in life and

claim the great blessings that He has in store for each of us.